Re: the new guy

[Guest guest]

Welcome to the group - it's a pity you need to be here, but I'm glad

you've found us Wow, 20 years, that's a long time. Like you, although I got

the neuro-sarcoid dx relatively recently (~Nov last year), looking back I'm

pretty sure I've had it for at least 5 years, if not a bit longer.

xo

>

> hi all

>

> i'm just joining this group today, though i've been arm wrestling with sarcoid

for a long time (20 years next month). it's been a personal and private battle,

by choice, all this time, because i thought my life would be more normal if i

tried to pretend it wasn't such a big deal.

>

> but now, after so many years of pulmonary function tests and ophthalmologist

visits, pills and needles, i am tired of going it alone. and, it looks like my

sarcoid has finally spread to my head. headaches and nausea, vertigo, and

sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal

now it's not confirmed yet, i have to find a way to pay for a brain MRI scan

to confirm it, but with the new symptoms i have, i think it's a foregone

conclusion. after googling the symptoms, i realize i've probably had

neurosarcoid for the past few years & just never knew it.

>

> so, don't mind me, i'm going to poke around some past messaages, & you'll

probably hear from me now & then. i can handle the eye problems and the short

breath on my own pretty well (practice), but when things start going whonky in

my head, i just might need to speak up once in a while

>

> chris (skugger)

>

>

[Guest guest]

Welcome sorry you have this disease, but we are here for you, for questions, are you just want to let off some steam.  Whatever it is you need to know, we probably have the answer, there are many of us here, and we've all had/have different experiences we would be happy to share with you. 

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

hi all

i'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.

but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.

so, don't mind me, i'm going to poke around some past messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while

chris (skugger)

[Guest guest]

Welcome Chris.

twenty years is a very long time for this monster.

I was dx with neuro-sarcoid in march of 06. Afraid every time I have a

flare because it is usually in my Right eye.

I question the fact that the nursing home I worked at was on a landfill.

Two more workers had similar problems. Brain tumors ect.

I am glad you found yourself here with us. There is a great amount of

knowledge here and wonderful people.

Prayers are with you. God Bless.

Jackie

Re: the new guy

> Welcome to the group - it's a pity you need to be here, but I'm glad

> you've found us Wow, 20 years, that's a long time. Like you, although

> I got the neuro-sarcoid dx relatively recently (~Nov last year), looking

> back I'm pretty sure I've had it for at least 5 years, if not a bit

> longer.

>

> xo

>

>

>

>

>>

>> hi all

>>

>> i'm just joining this group today, though i've been arm wrestling with

>> sarcoid for a long time (20 years next month). it's been a personal and

>> private battle, by choice, all this time, because i thought my life would

>> be more normal if i tried to pretend it wasn't such a big deal.

>>

>> but now, after so many years of pulmonary function tests and

>> ophthalmologist visits, pills and needles, i am tired of going it alone.

>> and, it looks like my sarcoid has finally spread to my head. headaches

>> and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to

>> pretend it's not such a big deal now it's not confirmed yet, i have to

>> find a way to pay for a brain MRI scan to confirm it, but with the new

>> symptoms i have, i think it's a foregone conclusion. after googling the

>> symptoms, i realize i've probably had neurosarcoid for the past few years

>> & just never knew it.

>>

>> so, don't mind me, i'm going to poke around some past messaages, & you'll

>> probably hear from me now & then. i can handle the eye problems and the

>> short breath on my own pretty well (practice), but when things start

>> going whonky in my head, i just might need to speak up once in a while

>>

>> chris (skugger)

>>

>>

>

>

>

> ------------------------------------

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

>

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

[Guest guest]

Hello and welcome. I will tell you that you have found a great group of people who are caring and filled with information. I found them a couple years ago because my wife suffers with the disease. Like you hers is neurosarcoidosis. Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder. Take care and I will add you to my prayers that you have many more good days than bad.MattSubject: the new guyTo: Neurosarcoidosis Date: Monday, March 14,

2011, 3:55 PM

hi all

i'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.

but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.

so, don't mind me, i'm going to poke around some past messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while

chris (skugger)

[Guest guest]

 

hello all & many thanks for the warm welcome!

 

twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time.  i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future.  i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.

 

for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots.  and i was in pilot school at the time :/  had to wash out of that.  i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy.  only then did i learn what my eye problem was all about.  you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis?  when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31.  hearing that it was something called sarcoid was a huge relief, for about a day. 

 

anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself.  but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.

 

today i find myself working a job that offers absolutely no health coverage.  my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI.  has anyone ever tried shopping around for this kind of thing?  i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.

 

anyway, thanks again, nice to be here

 

chris (skugger)

Hello and welcome.  I will tell you that you have found a great group of people who are caring and filled with information.  I found them a couple years ago because my wife suffers with the disease.  Like you hers is neurosarcoidosis.  Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder.  Take care and I will add you to my prayers that you have many more good days than bad.

Matt

Subject: the new guy

To: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

 

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.

but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.

so, don't mind me, i'm going to poke around some past messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while

chris (skugger)

[Guest guest]

I'm sorry you have to have all these tests, and I can't tell you how much, but I know there expensive, however if you can stay out of the hospital for testing it will be less, whenever you have a test at a  hosp. it will be more.  Can you get any help on these tests, help from the state?

I also know that sometimes all the tests come back normal, so that's no help.  My MRI was normal, but by my symptoms My Neuro could tell me where he thought the granulomas were located.  My breathing tests are normal, yet I get short of breath, and trouble breathing if I lay on my Left side.  I was dx more then 16 years ago with a lymph node bx.  I now have several swollen lymph nodes, and multiple lesions all over my body.  Lesions bx as granulomas, but still neg MRI and normal blood work.  So I would ask which tests are the most important? 

and like I said stay out of the Hospitals if you can.  Let me know if you have any other questions?Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

 

hello all & many thanks for the warm welcome!

 

twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time.  i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future.  i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.

 

for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots.  and i was in pilot school at the time :/  had to wash out of that.  i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy.  only then did i learn what my eye problem was all about.  you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis?  when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31.  hearing that it was something called sarcoid was a huge relief, for about a day. 

 

anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself.  but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.

 

today i find myself working a job that offers absolutely no health coverage.  my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI.  has anyone ever tried shopping around for this kind of thing?  i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.

 

anyway, thanks again, nice to be here

 

chris (skugger)

Hello and welcome.  I will tell you that you have found a great group of people who are caring and filled with information.  I found them a couple years ago because my wife suffers with the disease.  Like you hers is neurosarcoidosis.  Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder.  Take care and I will add you to my prayers that you have many more good days than bad.

Matt

Subject: the new guy

To: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

 

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.

but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.

so, don't mind me, i'm going to poke around some past messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while

chris (skugger)

[Guest guest]

Hi I'm one of the moderators, it stinks doesn't it, to put things mildly about health care, medications, test and more test, doctors and more doctors, then you find some of the most incomptent doctors in the world, they know nothing and have no intentions in learning the new and current treatments/diagnosis for our awlful disease.. that being said, to answer your question, your MRI is around 5ooo.oo but that's only the beginning.. I don't know where you live but does your state have a state assistance program, or medicaid.. If I were you I run not walk to the Department of Human Services and ask to speak too one of the people that takes the information that you can give them and can help you with getting started.. Plus if you have paid anything out of your pocket or owe a lot take that with you as well... This isn't a cheap disease, I'm sure you already know that by now..It takes two years to recieve SSI after you apply.. Soo, get started.. with financial help and they fact that you already have problems with Sarcoid in you eyes and lungs I'm not sure if they consider that pre exsisting or not. Good question to ask..

Don't mean to scare ya, its just important to get a heads up on all the bills that you can get.. those test aren't cheap either.. Good luck, and welcome aboard.

Hugs,

NS Moderator

the new guyTo: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.so, don't mind me, i'm going to poke around some past messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while :)chris (skugger)

[Guest guest]

Wow, what a story. I've got permanent blind spots too, really annoying ...

I'm constantly thankful that I live in Australia with universal gvt health care,

and any medical test (from blood tests to MRIs) ordered through the hospital

system is free. When I was in hospital last year for 3 weeks, it didn't cost me

anything either. Good luck with getting the tests you need - the MRI with

contrast is one of the most important ones.

xo

>

>

> hello all & many thanks for the warm welcome!

>

> twenty years is a long time, & i'm grateful that the progression of my sarcoid

hasn't been all that rapid (knock wood), so i've been able to stay independent

all this time. i'm sure you all remember, as do i, those days after you were

first diagnosed - the physical effects of the disease were just about as bad as

the sudden uncertainty you felt about your future. i was 25 when i was

diagnosed, and ever since then, worrying about what was going to happen tomorrow

has had just as much an effect on me as the symptoms, if not more.

>

> for me, it started in my eyes, granulomas growing behind my retinas & causing

permanent blind spots. and i was in pilot school at the time :/ had to wash

out of that. i was misdiagnosed for the first five years before it finally

spread to my lungs, brought about new symptoms, & my doctor ordered a

bronchoscopy to do a biopsy. only then did i learn what my eye problem was all

about. you know, i was so naive, i was actually relieved when i got the sarcoid

diagnosis? when it got into my lungs, with all the weird chest pains that

brings, i was convinced i was having a heart attack at 31. hearing that it was

something called sarcoid was a huge relief, for about a day.

>

> anyway, it's always been so very difficult to explain all the aspects of this

disease, and to explain that my medication (referring to prednisone) often made

me behave in ways i otherwise would not, that i quickly quit telling people

about it, even my family, and just dealt with it myself. but these days, not

seeing well enough to drive anymore, starting to struggle with a single flight

of stairs, and now the neurosarcoid symptoms, i think it's time to stop

pretending i'm not really that sick, and to stop keeping it all to myself.

>

> today i find myself working a job that offers absolutely no health coverage.

my new rheumatologist, whom i first visited last week, who is the the one who

has raised the red flag about neurosarcoid, wants me to get about $10k worth of

tests, starting with a brain MRI. has anyone ever tried shopping around for

this kind of thing? i'm not sure what the price range of this kind of thing is,

but i'm sure i won't like it when i hear it.

>

> anyway, thanks again, nice to be here

>

> chris (skugger)

>

>

>

>

> Hello and welcome. I will tell you that you have found a great group of

people who are caring and filled with information. I found them a couple years

ago because my wife suffers with the disease. Like you hers is

neurosarcoidosis. Was not confirmed until 2004 after many years of being

diagnosed as just seizure disorder. Take care and I will add you to my prayers

that you have many more good days than bad.

>

> Matt

>

>

>

>

> Subject: the new guy

> To: Neurosarcoidosis

> Date: Monday, March 14, 2011, 3:55 PM

>

>

>

>

> hi all

>

> i'm just joining this group today, though i've been arm wrestling with sarcoid

for a long time (20 years next month). it's been a personal and private battle,

by choice, all this time, because i thought my life would be more normal if i

tried to pretend it wasn't such a big deal.

>

> but now, after so many years of pulmonary function tests and ophthalmologist

visits, pills and needles, i am tired of going it alone. and, it looks like my

sarcoid has finally spread to my head. headaches and nausea, vertigo, and

sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal

now it's not confirmed yet, i have to find a way to pay for a brain MRI scan

to confirm it, but with the new symptoms i have, i think it's a foregone

conclusion. after googling the symptoms, i realize i've probably had

neurosarcoid for the past few years & just never knew it.

>

> so, don't mind me, i'm going to poke around some past messaages, & you'll

probably hear from me now & then. i can handle the eye problems and the short

breath on my own pretty well (practice), but when things start going whonky in

my head, i just might need to speak up once in a while

>

> chris (skugger)

>

>

>

>

>

>

>

>

[Guest guest]

your doc may have already told you that NS is primarily a disease of exclusion; the MRI, spinal tap, etc. will rule out other possibilities. For many, if not most, of us, we don't have anything that says "You have neurosarcoidosis!" In my case, one MRI had a subtle area, but the radiologists had differing opinions on it. Several other MRIs were totally normal. Spinal tap & lab work normal. But because I had a lymph node biopsy that was positive for sarc, and later a lung biopsy, once I developed neurologic symptoms I was diagnosed with NS--but not initially. I spent a year with increasinging symptoms, being told I had a virus and/or poor lifestyle habits, before a neuro made the call. So you might sit down with your rheumy & have a frank discussion. If he doesn't know that you lack health insurance, tell him. Then ask him how each of these tests will influence treatment decisions. What if you have a negative MRI? Normal ACE level? There are folks who have been given a presumptive diagnosis of NS & treated, based on a thorough history & comprehensive physical exam. This requires a physician who has as much faith in his own skills as in technology.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

> To: Neurosarcoidosis > Date: Thu, 17 Mar 2011 09:08:48 +1100> Subject: Re: the new guy> > Wow, what a story. I've got permanent blind spots too, really annoying ...> > I'm constantly thankful that I live in Australia with universal gvt health care, and any medical test (from blood tests to MRIs) ordered through the hospital system is free. When I was in hospital last year for 3 weeks, it didn't cost me anything either. Good luck with getting the tests you need - the MRI with contrast is one of the most important ones.> > xo > > > > > > > > > hello all & many thanks for the warm welcome!> > > > twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time. i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future. i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.> > > > for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots. and i was in pilot school at the time :/ had to wash out of that. i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy. only then did i learn what my eye problem was all about. you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis? when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31. hearing that it was something called sarcoid was a huge relief, for about a day. > > > > anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself. but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.> > > > today i find myself working a job that offers absolutely no health coverage. my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI. has anyone ever tried shopping around for this kind of thing? i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.> > > > anyway, thanks again, nice to be here > > > > chris (skugger)> > > > > > > > > > Hello and welcome. I will tell you that you have found a great group of people who are caring and filled with information. I found them a couple years ago because my wife suffers with the disease. Like you hers is neurosarcoidosis. Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder. Take care and I will add you to my prayers that you have many more good days than bad.> > > > Matt> > > > > > > > > > Subject: the new guy> > To: Neurosarcoidosis > > Date: Monday, March 14, 2011, 3:55 PM> > > > > > > > > > hi all> > > > i'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.> > > > but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.> > > > so, don't mind me, i'm going to poke around some past messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while > > > > chris (skugger)> > > > > > > > > > > > > > > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

nice to meet you just wish it was under better circumstances. There is an enormous amount of information, and help finding answers, and the individuals who put it together did a great job. take care, connie

To: Neurosarcoidosis Sent: Mon, March 14, 2011 3:55:17 PMSubject: the new guy

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.so, don't mind me, i'm going to poke around some past

messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while :)chris (skugger)

[Guest guest]

do you live near a university hospital (Univ of Fl in Gainesville has one-Shands); sometimes the hospitals like these have special programs for people who don't have insurance. The Shands in ville has a Shands Card, and once you are eligible, it takes care of everything at their facility. If I can think of anything else I will let you know. What is your corrected visual acuity? (if you don't mind telling me) Connie

To: Neurosarcoidosis Sent: Wed, March 16, 2011 1:25:35 PMSubject: Re: the new guy

hello all & many thanks for the warm welcome!

twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time. i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future. i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.

for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots. and i was in pilot school at the time :/ had to wash out of that. i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy. only then did i learn what my eye problem was all about. you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis? when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31. hearing that it was something called sarcoid was a huge relief, for about a day.

anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself. but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.

today i find myself working a job that offers absolutely no health coverage. my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI. has anyone ever tried shopping around for this kind of thing? i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.

anyway, thanks again, nice to be here

chris (skugger)

Hello and welcome. I will tell you that you have found a great group of people who are caring and filled with information. I found them a couple years ago because my wife suffers with the disease. Like you hers is neurosarcoidosis. Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder. Take care and I will add you to my prayers that you have many more good days than bad.Matt

Subject: the new guyTo: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.so, don't mind me, i'm going to poke around some past

messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while :)chris (skugger)

[Guest guest]

The test that seem to better let me know where I stood was done by a neuropsychologist. It measured out my memory deficits, cognitive problems, etc. He said I was very good at compensating, and it wasn't at dimentia stage yet so that was good. It gave me a better idea of what I needed to adjust in order to get around the limitations as much as possible. Trust me you will be surprised how creative you can be.

I was like Marla in some areas, I could pass pft's, etc. But when I kept on struggling to breathe, and coughing my brains out they did the first bronchoscope. They found a mess, for over a year everytime my pulmonologist saw me he would always say "you were a very sick girl". I can't have MRI's, (pacer); but it has been the same with CT's. The only time I have had the sarc show itself, besides biopsies, was a "sunset" knee xray. The knee is ruined, and there were 8 good sized little boogers sitting all around my knee joint having a field day.

Private is probably your best price best, but I would ask the neuro just what he thought the chances were of actually getting good info with the mri.....connie

To: Neurosarcoidosis Sent: Wed, March 16, 2011 4:59:01 PMSubject: Re: the new guy

I'm sorry you have to have all these tests, and I can't tell you how much, but I know there expensive, however if you can stay out of the hospital for testing it will be less, whenever you have a test at a hosp. it will be more. Can you get any help on these tests, help from the state? I also know that sometimes all the tests come back normal, so that's no help. My MRI was normal, but by my symptoms My Neuro could tell me where he thought the granulomas were located. My breathing tests are normal, yet I get short of breath, and trouble breathing if I lay on my Left side. I was dx more then 16 years ago with a lymph node bx. I now have several swollen lymph nodes, and multiple lesions all over my body. Lesions bx as granulomas, but still neg MRI and normal blood work. So I would ask which tests are the most important? and like I said stay out of the Hospitals if you can.

Let me know if you have any other questions?Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

hello all & many thanks for the warm welcome!

twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time. i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future. i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.

for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots. and i was in pilot school at the time :/ had to wash out of that. i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy. only then did i learn what my eye problem was all about. you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis? when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31. hearing that it was something called sarcoid was a huge relief, for about a day.

anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself. but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.

today i find myself working a job that offers absolutely no health coverage. my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI. has anyone ever tried shopping around for this kind of thing? i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.

anyway, thanks again, nice to be here

chris (skugger)

Hello and welcome. I will tell you that you have found a great group of people who are caring and filled with information. I found them a couple years ago because my wife suffers with the disease. Like you hers is neurosarcoidosis. Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder. Take care and I will add you to my prayers that you have many more good days than bad.Matt

Subject: the new guyTo: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.so, don't mind me, i'm going to poke around some past

messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while :)chris (skugger)

[Guest guest]

Don't shoot me dead , but it only takes a long time to get SSI if you are younger, and your symptoms don't meet the listing. At Chris' age it will be a struggle, that's why I asked what his visual acuity was, there are also allowances for "unable to maintain a 40 hr week (sometimes this is due to weakness, pain, or side effects of medicine). Also PFT's that meet a listing, however the sentence about the stairs makes me think that would not meet. The neuro symptoms are a little harder if there is not enough physical factor involved, because they go to repetitive jobs that don't require a great deal of mental sharpness. I don't mean to sound like a downer, I just like to know what I am facing upfront, and I thought maybe

would too. (For the record we do not pay atty's any attention in the initial or recon stages of SSI-SSD cases, you only need them for hearings.)

Your best bet is what told you about the state assistance programs. One of my clients went to another state and stayed with a friend, because she could get assistance there but not where she lived.

To: Neurosarcoidosis Sent: Wed, March 16, 2011 5:51:02 PMSubject: Re: the new guy

Hi I'm one of the moderators, it stinks doesn't it, to put things mildly about health care, medications, test and more test, doctors and more doctors, then you find some of the most incomptent doctors in the world, they know nothing and have no intentions in learning the new and current treatments/diagnosis for our awlful disease.. that being said, to answer your question, your MRI is around 5ooo.oo but that's only the beginning.. I don't know where you live but does your state have a state assistance program, or medicaid.. If I were you I run not walk to the Department of Human Services and ask to speak too one of the people that takes the information that you can give them and can help you with getting started.. Plus if you have paid anything out of your pocket or owe a lot take that with you as well... This isn't a cheap disease, I'm sure you already know that by now..It takes two years to

recieve SSI after you apply.. Soo, get started.. with financial help and they fact that you already have problems with Sarcoid in you eyes and lungs I'm not sure if they consider that pre exsisting or not. Good question to ask..

Don't mean to scare ya, its just important to get a heads up on all the bills that you can get.. those test aren't cheap either.. Good luck, and welcome aboard.

Hugs,

NS Moderator

the new guyTo: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.so, don't mind me, i'm going to poke around some past

messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while :)chris (skugger)

[Guest guest]

I am like Rose Chris. My neuro did what Rose's doctor did. I had the spinal tape, blood work, brain CT. The symptoms are what put the name to it.

To: neurosarcoidosis Sent: Thu, March 17, 2011 8:16:06 PMSubject: RE: the new guy

your doc may have already told you that NS is primarily a disease of exclusion; the MRI, spinal tap, etc. will rule out other possibilities. For many, if not most, of us, we don't have anything that says "You have neurosarcoidosis!" In my case, one MRI had a subtle area, but the radiologists had differing opinions on it. Several other MRIs were totally normal. Spinal tap & lab work normal. But because I had a lymph node biopsy that was positive for sarc, and later a lung biopsy, once I developed neurologic symptoms I was diagnosed with NS--but not initially. I spent a year with increasinging symptoms, being told I had a virus and/or poor lifestyle habits, before a neuro made the call. So you might sit down with your rheumy & have a frank discussion. If he doesn't know that you lack health insurance, tell him. Then ask him how each of these tests will influence treatment

decisions. What if you have a negative MRI? Normal ACE level? There are folks who have been given a presumptive diagnosis of NS & treated, based on a thorough history & comprehensive physical exam. This requires a physician who has as much faith in his own skills as in technology.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) > To: Neurosarcoidosis > Date: Thu, 17 Mar 2011 09:08:48 +1100> Subject: Re: the new guy> > Wow, what a story. I've got permanent blind spots too, really annoying ...> > I'm constantly thankful that I live in Australia with universal gvt health care, and any medical test (from blood tests to MRIs) ordered through the hospital system is free. When I was in hospital last year for 3 weeks, it didn't cost me anything either. Good luck with getting the tests you need - the MRI with contrast is one of the most important ones.> > xo > > > > > > > > > hello all & many thanks for the warm welcome!> > > > twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't

been all that rapid (knock wood), so i've been able to stay independent all this time. i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future. i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.> > > > for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots. and i was in pilot school at the time :/ had to wash out of that. i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy. only then did i learn what my eye problem was all about. you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis? when it got

into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31. hearing that it was something called sarcoid was a huge relief, for about a day. > > > > anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself. but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.> > > > today i find myself working a job that offers absolutely no health coverage. my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about

neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI. has anyone ever tried shopping around for this kind of thing? i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.> > > > anyway, thanks again, nice to be here > > > > chris (skugger)> > > > > > > > > > Hello and welcome. I will tell you that you have found a great group of people who are caring and filled with information. I found them a couple years ago because my wife suffers with the disease. Like you hers is neurosarcoidosis. Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder. Take care and I will add you to my prayers that you have many more good days than bad.> > > > Matt>

> > > > > > > > > Subject: the new guy> > To: Neurosarcoidosis > > Date: Monday, March 14, 2011, 3:55 PM> > > > > > > > > > hi all> > > > i'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.> > > > but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12

hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.> > > > so, don't mind me, i'm going to poke around some past messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while > > > > chris (skugger)> > > > > > > > > > > > > > > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The

Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]



I never saw a neuropsychologist.. mine was a neuroimmunologist,same doc's that treat MS Patients

the new guyTo: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.so, don't mind me, i'm going to poke around some past messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while :)chris (skugger)

[Guest guest]

Not sure where you are living, but here they have independent MRI locations where the price that I paid was $600 for my MRI of the brain, with and without contrast. The company that it was called was CDI. It is a lot cheaper than the hospital and local lab xray department that is in the doctor offices. Something to check out it you have it in your city.

Good luck.

To: Neurosarcoidosis Sent: Wed, March 16, 2011 12:25:35 PMSubject: Re: the new guy

hello all & many thanks for the warm welcome!

twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time. i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future. i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.

for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots. and i was in pilot school at the time :/ had to wash out of that. i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy. only then did i learn what my eye problem was all about. you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis? when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31. hearing that it was something called sarcoid was a huge relief, for about a day.

anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself. but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.

today i find myself working a job that offers absolutely no health coverage. my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI. has anyone ever tried shopping around for this kind of thing? i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.

anyway, thanks again, nice to be here

chris (skugger)

Hello and welcome. I will tell you that you have found a great group of people who are caring and filled with information. I found them a couple years ago because my wife suffers with the disease. Like you hers is neurosarcoidosis. Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder. Take care and I will add you to my prayers that you have many more good days than bad.Matt

Subject: the new guyTo: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.so, don't mind me, i'm going to poke around some past

messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while :)chris (skugger)

[Guest guest]

, that's an excellent idea. Many times we don't even consider possible alternatives, or even know there are anyway. One of the great things about this group.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 21 Mar 2011 08:32:48 -0700Subject: Re: the new guy

Not sure where you are living, but here they have independent MRI locations where the price that I paid was $600 for my MRI of the brain, with and without contrast. The company that it was called was CDI. It is a lot cheaper than the hospital and local lab xray department that is in the doctor offices. Something to check out it you have it in your city.

Good luck.

To: Neurosarcoidosis Sent: Wed, March 16, 2011 12:25:35 PMSubject: Re: the new guy

hello all & many thanks for the warm welcome!

twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time. i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future. i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.

for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots. and i was in pilot school at the time :/ had to wash out of that. i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy. only then did i learn what my eye problem was all about. you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis? when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31. hearing that it was something called sarcoid was a huge relief, for about a day.

anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself. but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.

today i find myself working a job that offers absolutely no health coverage. my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI. has anyone ever tried shopping around for this kind of thing? i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.

anyway, thanks again, nice to be here

chris (skugger)

Hello and welcome. I will tell you that you have found a great group of people who are caring and filled with information. I found them a couple years ago because my wife suffers with the disease. Like you hers is neurosarcoidosis. Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder. Take care and I will add you to my prayers that you have many more good days than bad.Matt

Subject: the new guyTo: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.so, don't mind me, i'm going to poke around some past messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while :)chris (skugger)

[Guest guest]

 

i wanted to say thanks to everyone responding to this thread, and apologize for not replying sooner.  many of the things you folks brought up had gotten me to spend some time researching & making phone calls!

 

as i alluded to in another post, i think i got my first brain MRI squared away.  i'll be doing it at the hospital (ugh).  i spent quite a bit of time shopping around, but for me, in my area, there's not that many options, and traveling a long distance to get a cheaper MRI would be just about the same cost as going to the local hospital.  so, i opened an account with the patient accounts department, 0% interest & they'll work with me, and the MRI i need is $2300.  ugh again.

 

Connie, i do not at all mind you asking me about my eyesight   i started getting blind spots in my left eye first, & it didn't bother my right eye for a number of years.  today, my left eye is 20/200 (i can read better using averted vision rather than direct vision!) and my right eye is about 20/50.  i still have a valid driver's license, but only because this past November i was able to renew it thru the mail, rather than going in to the DMV for the usual eye test.  it's always been a source of confusion for me - does one wait until he's 100% sure that he shouldn't be driving anymore, before he hangs up his keys?  or does one do that before it's necessary, better safe than sorry, even though he can still drive?  i still struggle with it.  maybe i'll sell my Jeep to pay for my MRI!

 

i have also taken the advice given here & have an upcoming appointment to talk to DHS.  also, a  very knowledgeable person posted SSD info here (sorry i'm blanking on your name!) for which i'm thankful & i'll have to re-read that one to see if there's something i should be doing.

 

okay, i'm writing this at work &   really should get back to it.  thanks again to everyone for the advice.

 

chris

 

, that's an excellent idea.  Many times we don't even consider possible alternatives, or even know there are anyway.  One of the great things about this group.

Ramblin' RoseModerator

  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

 

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 21 Mar 2011 08:32:48 -0700

Subject: Re: the new guy

Not sure where you are living, but here they have independent MRI locations where the price that I paid was $600 for my MRI of the brain, with and without contrast.  The company that it was called was CDI.  It is a lot cheaper than the hospital and local lab xray department that is in the doctor offices.  Something to check out it you have it in your city.

Good luck.

To: Neurosarcoidosis

Sent: Wed, March 16, 2011 12:25:35 PMSubject: Re: the new guy 

 

hello all & many thanks for the warm welcome!

 

twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time.  i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future.  i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.

 

for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots.  and i was in pilot school at the time :/  had to wash out of that.  i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy.  only then did i learn what my eye problem was all about.  you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis?  when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31.  hearing that it was something called sarcoid was a huge relief, for about a day. 

 

anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself.  but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.

 

today i find myself working a job that offers absolutely no health coverage.  my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI.  has anyone ever tried shopping around for this kind of thing?  i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.

 

anyway, thanks again, nice to be here

 

chris (skugger)

Hello and welcome.  I will tell you that you have found a great group of people who are caring and filled with information.  I found them a couple years ago because my wife suffers with the disease.  Like you hers is neurosarcoidosis.  Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder.  Take care and I will add you to my prayers that you have many more good days than bad.

Matt

Subject: the new guy

To: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

 

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.

but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.

so, don't mind me, i'm going to poke around some past messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while

chris (skugger)

[Guest guest]

Don't shoot I'm an adjudicator for SSA-DDS. The eyesight is not a listing for SSD- you still have what they consider (1) good eye, but some of the other problems may be allowable such as "unable to complete a 40 hr week" (this sometimes comes in to play because of med side effects, fatigue, persistent pain) Not able to return to previous work. Inability to effectively ambulate due to two weight bearing major joints being effected. Cognitive, memory, or concentration issues for someone over 55 and older with a precision position requiring astute mental capacity. If you are 55 or older that is a plus. If you are 55, and your previous work was say medium to heavy (medium is 20 - 50 lbs occasionally) Heavy is 50 lbs plus

occasionally. Of ir your position required extensive visual accuity-Accountant, phsician, nurse, phlebotomist, semi-driver, roofer, construction worker,etc. - this can be what is called a Med Voc allowance. At 55 we don't normally tell somebody they can learn something new.

If you do apply think carefully before filling out the work history. We often sell ourselves short when putting down what we think we do on a job. I have contacted people I know under estimated the weights they lifted on their job, the amount of standing/walking, length of time sitting, reaching, stair climbing, grip strength, preciseness required in their position, ability to remember details, and structured functions, work on multiple and various machinery, etc I would recognize the job, and know they had not given themselves enough credit for the job they performed. Also be brutally honest when filling out the function report. Put your limitations out there. Sometimes we don't want to admit what we can't do anymore (I personally hate it). But this is the only way the adjudicator can really see what destruction this illness is doing.

PS:No you don't have to be 55 to be approved. All ages, from babies on up

And no I am not the evil one. I am a chronically sick person's biggest advocate, I know what it feels like.

To: Neurosarcoidosis Sent: Thu, March 31, 2011 2:43:47 PMSubject: Re: the new guy

i wanted to say thanks to everyone responding to this thread, and apologize for not replying sooner. many of the things you folks brought up had gotten me to spend some time researching & making phone calls!

as i alluded to in another post, i think i got my first brain MRI squared away. i'll be doing it at the hospital (ugh). i spent quite a bit of time shopping around, but for me, in my area, there's not that many options, and traveling a long distance to get a cheaper MRI would be just about the same cost as going to the local hospital. so, i opened an account with the patient accounts department, 0% interest & they'll work with me, and the MRI i need is $2300. ugh again.

Connie, i do not at all mind you asking me about my eyesight i started getting blind spots in my left eye first, & it didn't bother my right eye for a number of years. today, my left eye is 20/200 (i can read better using averted vision rather than direct vision!) and my right eye is about 20/50. i still have a valid driver's license, but only because this past November i was able to renew it thru the mail, rather than going in to the DMV for the usual eye test. it's always been a source of confusion for me - does one wait until he's 100% sure that he shouldn't be driving anymore, before he hangs up his keys? or does one do that before it's necessary, better safe than sorry, even though he can still drive? i still struggle with it. maybe i'll sell my Jeep to pay for my MRI!

i have also taken the advice given here & have an upcoming appointment to talk to DHS. also, a very knowledgeable person posted SSD info here (sorry i'm blanking on your name!) for which i'm thankful & i'll have to re-read that one to see if there's something i should be doing.

okay, i'm writing this at work & really should get back to it. thanks again to everyone for the advice.

chris

, that's an excellent idea. Many times we don't even consider possible alternatives, or even know there are anyway. One of the great things about this group.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 21 Mar 2011 08:32:48 -0700

Subject: Re: the new guy

Not sure where you are living, but here they have independent MRI locations where the price that I paid was $600 for my MRI of the brain, with and without contrast. The company that it was called was CDI. It is a lot cheaper than the hospital and local lab xray department that is in the doctor offices. Something to check out it you have it in your city.

Good luck.

To: Neurosarcoidosis Sent: Wed, March 16, 2011 12:25:35 PMSubject: Re: the new guy

hello all & many thanks for the warm welcome!

twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time. i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future. i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.

for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots. and i was in pilot school at the time :/ had to wash out of that. i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy. only then did i learn what my eye problem was all about. you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis? when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31. hearing that it was something called sarcoid was a huge relief, for about a day.

anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself. but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.

today i find myself working a job that offers absolutely no health coverage. my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI. has anyone ever tried shopping around for this kind of thing? i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.

anyway, thanks again, nice to be here

chris (skugger)

Hello and welcome. I will tell you that you have found a great group of people who are caring and filled with information. I found them a couple years ago because my wife suffers with the disease. Like you hers is neurosarcoidosis. Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder. Take care and I will add you to my prayers that you have many more good days than bad.Matt

Subject: the new guyTo: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.so, don't mind me, i'm going to poke around some past

messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while :)chris (skugger)

[Guest guest]

Connie, Of course you are not the evil one, you are our angel, with the information you have to share with us is so very valuable, don't know what I would do without your information, so remember that, we love you Connie.

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Don't shoot I'm an adjudicator for SSA-DDS.  The eyesight is not a listing for SSD- you still have what they consider (1) good eye, but some of the other problems may be allowable such as " unable to complete a 40 hr week " (this sometimes comes in to play because of med side effects, fatigue, persistent pain) Not able to return to previous work. Inability to effectively ambulate due to two weight bearing major joints being effected.  Cognitive, memory, or concentration issues for someone over 55 and older with a precision position requiring astute mental capacity.  If you are 55 or older that is a plus.  If you are 55, and your previous work was say medium to heavy (medium is 20 - 50 lbs occasionally) Heavy is 50 lbs plus

occasionally.  Of ir your position required extensive visual accuity-Accountant, phsician, nurse, phlebotomist, semi-driver, roofer, construction worker,etc. - this can be what is called a Med Voc allowance.  At 55 we don't normally tell somebody they can learn something new. 

 

If you do apply think carefully before filling out the work history.  We often sell ourselves short when putting down what we think we do on a job.  I have contacted people I know under estimated the weights they lifted on their job, the amount of standing/walking, length of time sitting, reaching, stair climbing, grip strength, preciseness required in their position, ability to remember details, and structured functions, work on multiple and various machinery, etc   I would recognize the job, and know they had not given themselves enough credit for the job they performed.  Also be brutally honest when filling out the function report.  Put your limitations out there.  Sometimes we don't want to admit what we can't do anymore (I personally hate it).  But this is the only way the adjudicator can really see what destruction this illness is doing. 

 

PS:No you don't have to be 55 to be approved.  All ages, from babies on up

 

And no I am not the evil one.  I am a chronically sick person's biggest advocate,  I know what it feels like.

To: Neurosarcoidosis

Sent: Thu, March 31, 2011 2:43:47 PMSubject: Re: the new guy 

 

i wanted to say thanks to everyone responding to this thread, and apologize for not replying sooner.  many of the things you folks brought up had gotten me to spend some time researching & making phone calls!

 

as i alluded to in another post, i think i got my first brain MRI squared away.  i'll be doing it at the hospital (ugh).  i spent quite a bit of time shopping around, but for me, in my area, there's not that many options, and traveling a long distance to get a cheaper MRI would be just about the same cost as going to the local hospital.  so, i opened an account with the patient accounts department, 0% interest & they'll work with me, and the MRI i need is $2300.  ugh again.

 

Connie, i do not at all mind you asking me about my eyesight   i started getting blind spots in my left eye first, & it didn't bother my right eye for a number of years.  today, my left eye is 20/200 (i can read better using averted vision rather than direct vision!) and my right eye is about 20/50.  i still have a valid driver's license, but only because this past November i was able to renew it thru the mail, rather than going in to the DMV for the usual eye test.  it's always been a source of confusion for me - does one wait until he's 100% sure that he shouldn't be driving anymore, before he hangs up his keys?  or does one do that before it's necessary, better safe than sorry, even though he can still drive?  i still struggle with it.  maybe i'll sell my Jeep to pay for my MRI!

 

i have also taken the advice given here & have an upcoming appointment to talk to DHS.  also, a  very knowledgeable person posted SSD info here (sorry i'm blanking on your name!) for which i'm thankful & i'll have to re-read that one to see if there's something i should be doing.

 

okay, i'm writing this at work &   really should get back to it.  thanks again to everyone for the advice.

 

chris

 

, that's an excellent idea.  Many times we don't even consider possible alternatives, or even know there are anyway.  One of the great things about this group.

Ramblin' RoseModerator

  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

 

To: Neurosarcoidosis From: precisesewing@...

Date: Mon, 21 Mar 2011 08:32:48 -0700

Subject: Re: the new guy

Not sure where you are living, but here they have independent MRI locations where the price that I paid was $600 for my MRI of the brain, with and without contrast.  The company that it was called was CDI.  It is a lot cheaper than the hospital and local lab xray department that is in the doctor offices.  Something to check out it you have it in your city.

Good luck.

To: Neurosarcoidosis

Sent: Wed, March 16, 2011 12:25:35 PMSubject: Re: the new guy 

 

hello all & many thanks for the warm welcome!

 

twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time.  i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future.  i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.

 

for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots.  and i was in pilot school at the time :/  had to wash out of that.  i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy.  only then did i learn what my eye problem was all about.  you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis?  when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31.  hearing that it was something called sarcoid was a huge relief, for about a day. 

 

anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself.  but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.

 

today i find myself working a job that offers absolutely no health coverage.  my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI.  has anyone ever tried shopping around for this kind of thing?  i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.

 

anyway, thanks again, nice to be here

 

chris (skugger)

Hello and welcome.  I will tell you that you have found a great group of people who are caring and filled with information.  I found them a couple years ago because my wife suffers with the disease.  Like you hers is neurosarcoidosis.  Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder.  Take care and I will add you to my prayers that you have many more good days than bad.

Matt

Subject: the new guy

To: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

 

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.

but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.

so, don't mind me, i'm going to poke around some past

messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while

chris (skugger)

[Guest guest]

count me in on that one. Thanks Connie

the new guyTo: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.so, don't mind me, i'm going to poke around some past messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while :)chris (skugger)

[Guest guest]

Hello to all. I would also like to welcome any new members. Sorry that you had to be dealt this Sarc disease but welcome. I am Sorry I have been missing in action but my eyes have been bothering me and the atropine medication makes it hard to see. Hense the large font. I have also been going through some marital issues and then got hit with the big second denial for disability. SSD said that I am not diabled enough and I could find something else to do. If I can barely see, I am not sure what they want me to do. Everything requires sight. I guess having chronic fatigue, headaches and joint pain is not enough. I do not know what to do at this point. Should I give up and try and find work or keep pressing on with the claim. Meanwhile I need income. I am so frustarted and disgusted I have

been crying all day. As if I asked to be like this at 36 years old. Anyway, I miss corresponding with everyone and cannot wait to be finished this medicine for my eyes. Hopefully my sight will get better. Still waiting for the red tape to get my remicade infusion. Does anyone suggest another drug? I do not know where to go at this point and am so frustrated. Sometimes I feel like the doctors are not listening to me. I need to get off of the prednisone (40mg) because my sugar and BP is sky high. I hope that you all are managing, maintaining and feeling okay. Thanks for listening and letting me vent.

Best Regards

La

To: Neurosarcoidosis Sent: Fri, April 1, 2011 1:45:13 AMSubject: Re: the new guy

Connie, Of course you are not the evil one, you are our angel, with the information you have to share with us is so very valuable, don't know what I would do without your information, so remember that, we love you Connie. :)Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

Don't shoot I'm an adjudicator for SSA-DDS. The eyesight is not a listing for SSD- you still have what they consider (1) good eye, but some of the other problems may be allowable such as "unable to complete a 40 hr week" (this sometimes comes in to play because of med side effects, fatigue, persistent pain) Not able to return to previous work. Inability to effectively ambulate due to two weight bearing major joints being effected. Cognitive, memory, or concentration issues for someone over 55 and older with a precision position requiring astute mental capacity. If you are 55 or older that is a plus. If you are 55, and your previous work was say medium to heavy (medium is 20 - 50 lbs occasionally) Heavy is 50 lbs plus occasionally. Of ir your position required extensive visual accuity-Accountant, phsician, nurse, phlebotomist, semi-driver, roofer, construction worker,etc. - this can be

what is called a Med Voc allowance. At 55 we don't normally tell somebody they can learn something new.

If you do apply think carefully before filling out the work history. We often sell ourselves short when putting down what we think we do on a job. I have contacted people I know under estimated the weights they lifted on their job, the amount of standing/walking, length of time sitting, reaching, stair climbing, grip strength, preciseness required in their position, ability to remember details, and structured functions, work on multiple and various machinery, etc I would recognize the job, and know they had not given themselves enough credit for the job they performed. Also be brutally honest when filling out the function report. Put your limitations out there. Sometimes we don't want to admit what we can't do anymore (I personally hate it). But this is the only way the adjudicator can really see what destruction this illness is doing.

PS:No you don't have to be 55 to be approved. All ages, from babies on up

And no I am not the evil one. I am a chronically sick person's biggest advocate, I know what it feels like.

To: Neurosarcoidosis Sent: Thu, March 31, 2011 2:43:47 PMSubject: Re: the new guy

i wanted to say thanks to everyone responding to this thread, and apologize for not replying sooner. many of the things you folks brought up had gotten me to spend some time researching & making phone calls!

as i alluded to in another post, i think i got my first brain MRI squared away. i'll be doing it at the hospital (ugh). i spent quite a bit of time shopping around, but for me, in my area, there's not that many options, and traveling a long distance to get a cheaper MRI would be just about the same cost as going to the local hospital. so, i opened an account with the patient accounts department, 0% interest & they'll work with me, and the MRI i need is $2300. ugh again.

Connie, i do not at all mind you asking me about my eyesight i started getting blind spots in my left eye first, & it didn't bother my right eye for a number of years. today, my left eye is 20/200 (i can read better using averted vision rather than direct vision!) and my right eye is about 20/50. i still have a valid driver's license, but only because this past November i was able to renew it thru the mail, rather than going in to the DMV for the usual eye test. it's always been a source of confusion for me - does one wait until he's 100% sure that he shouldn't be driving anymore, before he hangs up his keys? or does one do that before it's necessary, better safe than sorry, even though he can still drive? i still struggle with it. maybe i'll sell my Jeep to pay for my MRI!

i have also taken the advice given here & have an upcoming appointment to talk to DHS. also, a very knowledgeable person posted SSD info here (sorry i'm blanking on your name!) for which i'm thankful & i'll have to re-read that one to see if there's something i should be doing.

okay, i'm writing this at work & really should get back to it. thanks again to everyone for the advice.

chris

, that's an excellent idea. Many times we don't even consider possible alternatives, or even know there are anyway. One of the great things about this group.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 21 Mar 2011 08:32:48 -0700

Subject: Re: the new guy

Not sure where you are living, but here they have independent MRI locations where the price that I paid was $600 for my MRI of the brain, with and without contrast. The company that it was called was CDI. It is a lot cheaper than the hospital and local lab xray department that is in the doctor offices. Something to check out it you have it in your city.

Good luck.

To: Neurosarcoidosis Sent: Wed, March 16, 2011 12:25:35 PMSubject: Re: the new guy

hello all & many thanks for the warm welcome!

twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time. i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future. i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.

for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots. and i was in pilot school at the time :/ had to wash out of that. i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy. only then did i learn what my eye problem was all about. you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis? when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31. hearing that it was something called sarcoid was a huge relief, for about a day.

anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself. but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.

today i find myself working a job that offers absolutely no health coverage. my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI. has anyone ever tried shopping around for this kind of thing? i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.

anyway, thanks again, nice to be here

chris (skugger)

Hello and welcome. I will tell you that you have found a great group of people who are caring and filled with information. I found them a couple years ago because my wife suffers with the disease. Like you hers is neurosarcoidosis. Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder. Take care and I will add you to my prayers that you have many more good days than bad.Matt

Subject: the new guyTo: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.so, don't mind me, i'm going to poke around some past

messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while :)chris (skugger)

[Guest guest]

Thanks marla, I don't what I would do without all of you. Your the only ones I feel free to really talk about what is going on. I appreciate you all very much. connie

To: Neurosarcoidosis Sent: Fri, April 1, 2011 1:45:13 AMSubject: Re: the new guy

Connie, Of course you are not the evil one, you are our angel, with the information you have to share with us is so very valuable, don't know what I would do without your information, so remember that, we love you Connie. :)Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

Don't shoot I'm an adjudicator for SSA-DDS. The eyesight is not a listing for SSD- you still have what they consider (1) good eye, but some of the other problems may be allowable such as "unable to complete a 40 hr week" (this sometimes comes in to play because of med side effects, fatigue, persistent pain) Not able to return to previous work. Inability to effectively ambulate due to two weight bearing major joints being effected. Cognitive, memory, or concentration issues for someone over 55 and older with a precision position requiring astute mental capacity. If you are 55 or older that is a plus. If you are 55, and your previous work was say medium to heavy (medium is 20 - 50 lbs occasionally) Heavy is 50 lbs plus occasionally. Of ir your position required extensive visual accuity-Accountant, phsician, nurse, phlebotomist, semi-driver, roofer, construction worker,etc. - this can be

what is called a Med Voc allowance. At 55 we don't normally tell somebody they can learn something new.

If you do apply think carefully before filling out the work history. We often sell ourselves short when putting down what we think we do on a job. I have contacted people I know under estimated the weights they lifted on their job, the amount of standing/walking, length of time sitting, reaching, stair climbing, grip strength, preciseness required in their position, ability to remember details, and structured functions, work on multiple and various machinery, etc I would recognize the job, and know they had not given themselves enough credit for the job they performed. Also be brutally honest when filling out the function report. Put your limitations out there. Sometimes we don't want to admit what we can't do anymore (I personally hate it). But this is the only way the adjudicator can really see what destruction this illness is doing.

PS:No you don't have to be 55 to be approved. All ages, from babies on up

And no I am not the evil one. I am a chronically sick person's biggest advocate, I know what it feels like.

To: Neurosarcoidosis Sent: Thu, March 31, 2011 2:43:47 PMSubject: Re: the new guy

i wanted to say thanks to everyone responding to this thread, and apologize for not replying sooner. many of the things you folks brought up had gotten me to spend some time researching & making phone calls!

as i alluded to in another post, i think i got my first brain MRI squared away. i'll be doing it at the hospital (ugh). i spent quite a bit of time shopping around, but for me, in my area, there's not that many options, and traveling a long distance to get a cheaper MRI would be just about the same cost as going to the local hospital. so, i opened an account with the patient accounts department, 0% interest & they'll work with me, and the MRI i need is $2300. ugh again.

Connie, i do not at all mind you asking me about my eyesight i started getting blind spots in my left eye first, & it didn't bother my right eye for a number of years. today, my left eye is 20/200 (i can read better using averted vision rather than direct vision!) and my right eye is about 20/50. i still have a valid driver's license, but only because this past November i was able to renew it thru the mail, rather than going in to the DMV for the usual eye test. it's always been a source of confusion for me - does one wait until he's 100% sure that he shouldn't be driving anymore, before he hangs up his keys? or does one do that before it's necessary, better safe than sorry, even though he can still drive? i still struggle with it. maybe i'll sell my Jeep to pay for my MRI!

i have also taken the advice given here & have an upcoming appointment to talk to DHS. also, a very knowledgeable person posted SSD info here (sorry i'm blanking on your name!) for which i'm thankful & i'll have to re-read that one to see if there's something i should be doing.

okay, i'm writing this at work & really should get back to it. thanks again to everyone for the advice.

chris

, that's an excellent idea. Many times we don't even consider possible alternatives, or even know there are anyway. One of the great things about this group.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 21 Mar 2011 08:32:48 -0700

Subject: Re: the new guy

Not sure where you are living, but here they have independent MRI locations where the price that I paid was $600 for my MRI of the brain, with and without contrast. The company that it was called was CDI. It is a lot cheaper than the hospital and local lab xray department that is in the doctor offices. Something to check out it you have it in your city.

Good luck.

To: Neurosarcoidosis Sent: Wed, March 16, 2011 12:25:35 PMSubject: Re: the new guy

hello all & many thanks for the warm welcome!

twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time. i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future. i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.

for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots. and i was in pilot school at the time :/ had to wash out of that. i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy. only then did i learn what my eye problem was all about. you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis? when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31. hearing that it was something called sarcoid was a huge relief, for about a day.

anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself. but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.

today i find myself working a job that offers absolutely no health coverage. my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI. has anyone ever tried shopping around for this kind of thing? i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.

anyway, thanks again, nice to be here

chris (skugger)

Hello and welcome. I will tell you that you have found a great group of people who are caring and filled with information. I found them a couple years ago because my wife suffers with the disease. Like you hers is neurosarcoidosis. Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder. Take care and I will add you to my prayers that you have many more good days than bad.Matt

Subject: the new guyTo: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.so, don't mind me, i'm going to poke around some past

messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while :)chris (skugger)

[Guest guest]

I know it sounds God awful, but actually (2) denials at your age will help you. This is the only situation in which you will hear me say hire an attorney. It is extremely difficult to obtain SSD at your age, but not impossible. This will be the only situation that I will say "Hire an Attorney". Until a case reaches this point they do not help, they simply take money for dong nothing. In initial cases they have no bearing on my decision at all. Find one that only gets paid if you do, with the stipulation they owe you nothing if they don't deliver. The maximum they can take is 25% of the back pay. Tell them you want a court hearing (appeal) for your case. Do you know what your corrected vision is? Also go to your doctors individually and ask them to write you a "Medical Source Statement" detailing the extent of your eye problems, prednisone side effects, blood pressure issues, your blood sugar issues, severe fatigue, limited ability to walk, stand (BP problems cause problems in these areas), headaches, peripheral neuropathy because of the pred induced diabetes, etc. These letters carry a tremendous amount of weight on a case. A doctor's MSS carries more weight than any attorney. Also be brutally honest about the depression, memory, and cognitive issues you are having (I may be wrong and you may not have any of these issues, but they usually go along with the illness) Make the lawyer work for his money and keep after him, they get lazy if they are not watched and that can cost you the case. Like I have said before, when you fill out the function reports, be

brutally honest about your limitations. Alot of people have been denied until they take their case to the judge. Also when the case is restarted as your atty, or ask the caseworker yourself about being "PD'd", this is presumptive disability. If they let you have it, it is the only time a caseworker can have SSA release funds and Medicaid Gold to the applicant prior to the official decision. PD's are good for (6) months, and if for some reason the case does not have a positive outcome you still don't have to pay back the money, and you have had some dadgum good insurance in the meantime.

Also, check NeedyMeds.org for your medications. This is a website run by the pharmaceutical companies, no fees, no membership enrollment required. You simply go on the site, fine your medicine, fill out part of a really short application, take the paper to your doctor, he finishes his short little part, attaches your prescription and send it in. They supply a 90 day supply of medicine. The most I have ever seen a 90 supply cost is (one time per 90 days) $20.00. Alot of the time the cost is $0.00 for the 90 day order. And they supply all times of medicine, one of the meds another member takes if $924.00 per month-NeedyMeds supplies that med for free. I know it works because although my niece works she has no insurance, and she has asthma from the bad place. Her meds are $345.00, she gets them free from NeedyMeds.

Please let me know if I can help you. I am allowed to help, as I technically do not personally know you. In other words if we walked up on each other in the street and we did not tell each other our names, we would not recognize each other.

I'm sorry you are having problems, maybe we can get this straight. As I am sure you already know, this is what I do for a living. connie

To: Neurosarcoidosis Sent: Fri, April 1, 2011 11:39:39 PMSubject: Re: the new guy

Hello to all. I would also like to welcome any new members. Sorry that you had to be dealt this Sarc disease but welcome. I am Sorry I have been missing in action but my eyes have been bothering me and the atropine medication makes it hard to see. Hense the large font. I have also been going through some marital issues and then got hit with the big second denial for disability. SSD said that I am not diabled enough and I could find something else to do. If I can barely see, I am not sure what they want me to do. Everything requires sight. I guess having chronic fatigue, headaches and joint pain is not enough. I do not know what to do at this point. Should I give up and try and find work or keep pressing on with the claim. Meanwhile I need income. I am so frustarted and disgusted I have been crying all day. As if I asked to be like this at 36 years old. Anyway, I miss corresponding with everyone and cannot wait to be finished this

medicine for my eyes. Hopefully my sight will get better. Still waiting for the red tape to get my remicade infusion. Does anyone suggest another drug? I do not know where to go at this point and am so frustrated. Sometimes I feel like the doctors are not listening to me. I need to get off of the prednisone (40mg) because my sugar and BP is sky high. I hope that you all are managing, maintaining and feeling okay. Thanks for listening and letting me vent.

Best Regards

La

To: Neurosarcoidosis Sent: Fri, April 1, 2011 1:45:13 AMSubject: Re: the new guy

Connie, Of course you are not the evil one, you are our angel, with the information you have to share with us is so very valuable, don't know what I would do without your information, so remember that, we love you Connie. :)Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

Don't shoot I'm an adjudicator for SSA-DDS. The eyesight is not a listing for SSD- you still have what they consider (1) good eye, but some of the other problems may be allowable such as "unable to complete a 40 hr week" (this sometimes comes in to play because of med side effects, fatigue, persistent pain) Not able to return to previous work. Inability to effectively ambulate due to two weight bearing major joints being effected. Cognitive, memory, or concentration issues for someone over 55 and older with a precision position requiring astute mental capacity. If you are 55 or older that is a plus. If you are 55, and your previous work was say medium to heavy (medium is 20 - 50 lbs occasionally) Heavy is 50 lbs plus occasionally. Of ir your position required extensive visual accuity-Accountant, phsician, nurse, phlebotomist, semi-driver, roofer, construction worker,etc. - this can be

what is called a Med Voc allowance. At 55 we don't normally tell somebody they can learn something new.

If you do apply think carefully before filling out the work history. We often sell ourselves short when putting down what we think we do on a job. I have contacted people I know under estimated the weights they lifted on their job, the amount of standing/walking, length of time sitting, reaching, stair climbing, grip strength, preciseness required in their position, ability to remember details, and structured functions, work on multiple and various machinery, etc I would recognize the job, and know they had not given themselves enough credit for the job they performed. Also be brutally honest when filling out the function report. Put your limitations out there. Sometimes we don't want to admit what we can't do anymore (I personally hate it). But this is the only way the adjudicator can really see what destruction this illness is doing.

PS:No you don't have to be 55 to be approved. All ages, from babies on up

And no I am not the evil one. I am a chronically sick person's biggest advocate, I know what it feels like.

To: Neurosarcoidosis Sent: Thu, March 31, 2011 2:43:47 PMSubject: Re: the new guy

i wanted to say thanks to everyone responding to this thread, and apologize for not replying sooner. many of the things you folks brought up had gotten me to spend some time researching & making phone calls!

as i alluded to in another post, i think i got my first brain MRI squared away. i'll be doing it at the hospital (ugh). i spent quite a bit of time shopping around, but for me, in my area, there's not that many options, and traveling a long distance to get a cheaper MRI would be just about the same cost as going to the local hospital. so, i opened an account with the patient accounts department, 0% interest & they'll work with me, and the MRI i need is $2300. ugh again.

Connie, i do not at all mind you asking me about my eyesight i started getting blind spots in my left eye first, & it didn't bother my right eye for a number of years. today, my left eye is 20/200 (i can read better using averted vision rather than direct vision!) and my right eye is about 20/50. i still have a valid driver's license, but only because this past November i was able to renew it thru the mail, rather than going in to the DMV for the usual eye test. it's always been a source of confusion for me - does one wait until he's 100% sure that he shouldn't be driving anymore, before he hangs up his keys? or does one do that before it's necessary, better safe than sorry, even though he can still drive? i still struggle with it. maybe i'll sell my Jeep to pay for my MRI!

i have also taken the advice given here & have an upcoming appointment to talk to DHS. also, a very knowledgeable person posted SSD info here (sorry i'm blanking on your name!) for which i'm thankful & i'll have to re-read that one to see if there's something i should be doing.

okay, i'm writing this at work & really should get back to it. thanks again to everyone for the advice.

chris

, that's an excellent idea. Many times we don't even consider possible alternatives, or even know there are anyway. One of the great things about this group.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 21 Mar 2011 08:32:48 -0700

Subject: Re: the new guy

Not sure where you are living, but here they have independent MRI locations where the price that I paid was $600 for my MRI of the brain, with and without contrast. The company that it was called was CDI. It is a lot cheaper than the hospital and local lab xray department that is in the doctor offices. Something to check out it you have it in your city.

Good luck.

To: Neurosarcoidosis Sent: Wed, March 16, 2011 12:25:35 PMSubject: Re: the new guy

hello all & many thanks for the warm welcome!

twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time. i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future. i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.

for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots. and i was in pilot school at the time :/ had to wash out of that. i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy. only then did i learn what my eye problem was all about. you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis? when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31. hearing that it was something called sarcoid was a huge relief, for about a day.

anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself. but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.

today i find myself working a job that offers absolutely no health coverage. my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI. has anyone ever tried shopping around for this kind of thing? i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.

anyway, thanks again, nice to be here

chris (skugger)

Hello and welcome. I will tell you that you have found a great group of people who are caring and filled with information. I found them a couple years ago because my wife suffers with the disease. Like you hers is neurosarcoidosis. Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder. Take care and I will add you to my prayers that you have many more good days than bad.Matt

Subject: the new guyTo: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.so, don't mind me, i'm going to poke around some past

messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while :)chris (skugger)

[Guest guest]

What's the hold up with the Remicade?  I would keep fighting for both, the Remicade and Disability, I don't know why you should get denied,  now that Sarcoidosis is on the disability list, that's crazy. If you believe in something keep fighting.  I fought for a whole year for Remicade, denied 3 times, before I finally got it. 

I will be starting Disability too, so we'll see how that goes, but I'm use to fighting for what I want, and I don't give up, you shouldn't either. I'll keep you in my prayers. 

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Hello to all. I would also like to welcome any new members. Sorry that you had to be dealt this Sarc disease but welcome. I am Sorry I have been missing in action but my eyes have been bothering me and the atropine medication makes it hard to see. Hense the large font. I have also been going through some marital issues and then got hit with the big second denial for disability. SSD said that I am not diabled enough and I could find something else to do. If I can barely see, I am not sure what they want me to do. Everything requires sight. I guess having chronic fatigue, headaches and joint pain is not enough. I do not know what to do at this point. Should I give up and try and find work or keep pressing on with the claim. Meanwhile I need income. I am so frustarted and disgusted I have

been crying all day. As if I asked to be like this at 36 years old. Anyway, I miss corresponding with everyone and cannot wait to be finished this medicine for my eyes. Hopefully my sight will get better. Still waiting for the red tape to get my remicade infusion. Does anyone suggest another drug? I do not know where to go at this point and am so frustrated. Sometimes I feel like the doctors are not listening to me. I need to get off of the prednisone (40mg) because my sugar and BP is sky high. I hope that you all are managing, maintaining and feeling okay. Thanks for listening and letting me vent.

 

Best Regards

La 

To: Neurosarcoidosis

Sent: Fri, April 1, 2011 1:45:13 AMSubject: Re: the new guy 

Connie, Of course you are not the evil one, you are our angel, with the information you have to share with us is so very valuable, don't know what I would do without your information, so remember that, we love you Connie.

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Don't shoot I'm an adjudicator for SSA-DDS.  The eyesight is not a listing for SSD- you still have what they consider (1) good eye, but some of the other problems may be allowable such as " unable to complete a 40 hr week " (this sometimes comes in to play because of med side effects, fatigue, persistent pain) Not able to return to previous work. Inability to effectively ambulate due to two weight bearing major joints being effected.  Cognitive, memory, or concentration issues for someone over 55 and older with a precision position requiring astute mental capacity.  If you are 55 or older that is a plus.  If you are 55, and your previous work was say medium to heavy (medium is 20 - 50 lbs occasionally) Heavy is 50 lbs plus occasionally.  Of ir your position required extensive visual accuity-Accountant, phsician, nurse, phlebotomist, semi-driver, roofer, construction worker,etc. - this can be

what is called a Med Voc allowance.  At 55 we don't normally tell somebody they can learn something new. 

 

If you do apply think carefully before filling out the work history.  We often sell ourselves short when putting down what we think we do on a job.  I have contacted people I know under estimated the weights they lifted on their job, the amount of standing/walking, length of time sitting, reaching, stair climbing, grip strength, preciseness required in their position, ability to remember details, and structured functions, work on multiple and various machinery, etc   I would recognize the job, and know they had not given themselves enough credit for the job they performed.  Also be brutally honest when filling out the function report.  Put your limitations out there.  Sometimes we don't want to admit what we can't do anymore (I personally hate it).  But this is the only way the adjudicator can really see what destruction this illness is doing. 

 

PS:No you don't have to be 55 to be approved.  All ages, from babies on up

 

And no I am not the evil one.  I am a chronically sick person's biggest advocate,  I know what it feels like.

To: Neurosarcoidosis

Sent: Thu, March 31, 2011 2:43:47 PMSubject: Re: the new guy 

 

i wanted to say thanks to everyone responding to this thread, and apologize for not replying sooner.  many of the things you folks brought up had gotten me to spend some time researching & making phone calls!

 

as i alluded to in another post, i think i got my first brain MRI squared away.  i'll be doing it at the hospital (ugh).  i spent quite a bit of time shopping around, but for me, in my area, there's not that many options, and traveling a long distance to get a cheaper MRI would be just about the same cost as going to the local hospital.  so, i opened an account with the patient accounts department, 0% interest & they'll work with me, and the MRI i need is $2300.  ugh again.

 

Connie, i do not at all mind you asking me about my eyesight   i started getting blind spots in my left eye first, & it didn't bother my right eye for a number of years.  today, my left eye is 20/200 (i can read better using averted vision rather than direct vision!) and my right eye is about 20/50.  i still have a valid driver's license, but only because this past November i was able to renew it thru the mail, rather than going in to the DMV for the usual eye test.  it's always been a source of confusion for me - does one wait until he's 100% sure that he shouldn't be driving anymore, before he hangs up his keys?  or does one do that before it's necessary, better safe than sorry, even though he can still drive?  i still struggle with it.  maybe i'll sell my Jeep to pay for my MRI!

 

i have also taken the advice given here & have an upcoming appointment to talk to DHS.  also, a  very knowledgeable person posted SSD info here (sorry i'm blanking on your name!) for which i'm thankful & i'll have to re-read that one to see if there's something i should be doing.

 

okay, i'm writing this at work &   really should get back to it.  thanks again to everyone for the advice.

 

chris

 

, that's an excellent idea.  Many times we don't even consider possible alternatives, or even know there are anyway.  One of the great things about this group.

Ramblin' RoseModerator

  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

 

To: Neurosarcoidosis From: precisesewing@...

Date: Mon, 21 Mar 2011 08:32:48 -0700

Subject: Re: the new guy

Not sure where you are living, but here they have independent MRI locations where the price that I paid was $600 for my MRI of the brain, with and without contrast.  The company that it was called was CDI.  It is a lot cheaper than the hospital and local lab xray department that is in the doctor offices.  Something to check out it you have it in your city.

Good luck.

To: Neurosarcoidosis

Sent: Wed, March 16, 2011 12:25:35 PMSubject: Re: the new guy 

 

hello all & many thanks for the warm welcome!

 

twenty years is a long time, & i'm grateful that the progression of my sarcoid hasn't been all that rapid (knock wood), so i've been able to stay independent all this time.  i'm sure you all remember, as do i, those days after you were first diagnosed - the physical effects of the disease were just about as bad as the sudden uncertainty you felt about your future.  i was 25 when i was diagnosed, and ever since then, worrying about what was going to happen tomorrow has had just as much an effect on me as the symptoms, if not more.

 

for me, it started in my eyes, granulomas growing behind my retinas & causing permanent blind spots.  and i was in pilot school at the time :/  had to wash out of that.  i was misdiagnosed for the first five years before it finally spread to my lungs, brought about new symptoms, & my doctor ordered a bronchoscopy to do a biopsy.  only then did i learn what my eye problem was all about.  you know, i was so naive, i was actually relieved when i got the sarcoid diagnosis?  when it got into my lungs, with all the weird chest pains that brings, i was convinced i was having a heart attack at 31.  hearing that it was something called sarcoid was a huge relief, for about a day. 

 

anyway, it's always been so very difficult to explain all the aspects of this disease, and to explain that my medication (referring to prednisone) often made me behave in ways i otherwise would not, that i quickly quit telling people about it, even my family, and just dealt with it myself.  but these days, not seeing well enough to drive anymore, starting to struggle with a single flight of stairs, and now the neurosarcoid symptoms, i think it's time to stop pretending i'm not really that sick, and to stop keeping it all to myself.

 

today i find myself working a job that offers absolutely no health coverage.  my new rheumatologist, whom i first visited last week, who is the the one who has raised the red flag about neurosarcoid, wants me to get about $10k worth of tests, starting with a brain MRI.  has anyone ever tried shopping around for this kind of thing?  i'm not sure what the price range of this kind of thing is, but i'm sure i won't like it when i hear it.

 

anyway, thanks again, nice to be here

 

chris (skugger)

Hello and welcome.  I will tell you that you have found a great group of people who are caring and filled with information.  I found them a couple years ago because my wife suffers with the disease.  Like you hers is neurosarcoidosis.  Was not confirmed until 2004 after many years of being diagnosed as just seizure disorder.  Take care and I will add you to my prayers that you have many more good days than bad.

Matt

Subject: the new guy

To: Neurosarcoidosis Date: Monday, March 14, 2011, 3:55 PM

 

hi alli'm just joining this group today, though i've been arm wrestling with sarcoid for a long time (20 years next month). it's been a personal and private battle, by choice, all this time, because i thought my life would be more normal if i tried to pretend it wasn't such a big deal.

but now, after so many years of pulmonary function tests and ophthalmologist visits, pills and needles, i am tired of going it alone. and, it looks like my sarcoid has finally spread to my head. headaches and nausea, vertigo, and sleeping about 12 hours a day... kinda hard to pretend it's not such a big deal now it's not confirmed yet, i have to find a way to pay for a brain MRI scan to confirm it, but with the new symptoms i have, i think it's a foregone conclusion. after googling the symptoms, i realize i've probably had neurosarcoid for the past few years & just never knew it.

so, don't mind me, i'm going to poke around some past

messaages, & you'll probably hear from me now & then. i can handle the eye problems and the short breath on my own pretty well (practice), but when things start going whonky in my head, i just might need to speak up once in a while

chris (skugger)