Re: Need Advice new member (MRIs)

[Guest guest]

MRIs I think are the enemy of NS! My first MRIs when I got sick showed activity.

Its been 8 years so I can't remember exactly, but I remember it said not typical

for demylination (so ruled out MS) but could have meant all sorts of other

things. It showed the same thing several times. That neurologist then tried to

tell me that it was probably a fault in the MRI - even though they were taken in

different machines.

I then changed neurologist. The radiology report said my next MRI was clear, but

my neuro ran over it with a fine tooth comb and found tiny spots of white matter

damage - thank goodness for him.

But any other dr who looked said " ALL CLEAR " .

What was on my side (well if there is a positive) is that I had an abnormal VER,

abnormal lumbar puncture, abnormal reflexes, so my neurologists knew there was

something wrong at least.

(and yes I'm the one who was misdiagnosed with MS)

BUT I mean to say if that MRI is clear, and you are numb, tingling, weak - PUSH

for other tests which can show there is something going on.

Rach

PS: I hope this is okay to say its the first time I've responded with info.

>

> Darin, lighten up!  We aren't here to judge others, and the choices they

make-- I really got the feeling of sarcasm from your post-- and we get enough of

that from family and friends. 

>

> When we are new to this disease, not only do we NOT know what to expect from

our docs, we also have a disease where the docs-- including most " specialists "

may only see 1-3 cases of sarcoidosis in their entire career.  So, even the

specialists are at a loss as to what and how to treat our sarcoidosis.

>

> The common approach is to treat with prednisone.  When we bring in the fact

that we are having short-term memory loss, or pain in our hands and feet, and

swollen joints and muscles, most of us are diagnosed with arthritis.  When the

ESR comes back in normal range (Erythocyte Sedimentation Rate that tells them if

we have rheumatoid arthritis) they blow us off as depressed or with the catch

all of fibromyalgia.  (Most docs still think Fibro is in our heads also...)

>

> You'll also find that even if the chest xray shows the " ground glass "

appearance, the pulmonologist will think sarcoidosis, but they also lean to the

general rule of thumg-- sarcoidosis will burn itself out in a couple of years--

and they will argue with you that the other body and mind issues are not at all

related to sarcoidosis.  They also lean to the diet/weight issues, so if you

are overweight-- get some exercise and change your diet- and that issue will go

away.  They don't put it together that because of systemic body pain and

shortness of breath that this is related to sarcoidosis.  Sadly, way too many

of the GP's and the specialists will go here first. 

>

> We end up being our best advocate-- and we have to go in armed with

information so that they can help us.  Fortunately, over the past 10 years,

there have been several groups and sites that have come out and can help TEACH

each person how to live as well as possible with sarcoidosis. 

>

> As for knowing what to ask your doctor to do-- how in the world would you know

if you've never even heard of this disease before you were diagnosed, and if you

are one that has only Neurosarc, or ocular involvement, or just pulmonary

involvement-- it is a matter of eliminating ALL the other autoimmune processes

and arthritises, before our docs come up with answers. 

>

> For instance, my neurologist swore I did not have NS.  Neurosarcoidosis

includes both the peripheral nervous system as well as the central nervous

system.  Neurologists have long thought that if you don't have any granulomas

showing up on brain scans-- that you don't have NS.  New studies show that even

a clear CT of the brain does not rule out NS.  A clear spinal tap does not mean

that you don't have NS. 

>

> Sarcoidosis is a systemic inflamatory disease-- and they don't know what

causes it.  Best we can do is treat the symptoms- and hope that our sarcoidosis

does not progress. 

>

> It is important that we realize that our docs are good at treating diabetes,

high blood pressure, heart disease, and acute health issues-- flu, sinus

infections-- etc-- but since they see so little sarcoidosis-- they really don't

follow up with it-- and most medical groups want their doctors to see 5 patients

per hour-- so they do what they can.  Sadly, they also walk into the exam room,

and look at you, within the first minute or so-- they've decided what you have--

and in so many cases-- we're given an anti-inflamatory, or pain meds-- and sent

on our way. 

>

> We have a list of the tests that should be run-- and many sites referenced for

your use.  WWW.SARCOIDOSISSHARMA.COM is excellant.  Dr. Sharma is a critical

care, pulmonologist at USC-LA.  He has also spent his entire medical career

trying to find the answers to treating sarcoidosis.  WWW.FSR.ORG   Foundation

for sarcoidosis research is also excellant-- www.arthritistoday.org is also

excellant for information on different medications-- we use their Drug Guide and

Vitamin/Mineral Guide often as references. 

>

> I'll try to find some prior posts that do have the list of tests, etc that you

can talk to your docs about.

>

> In the meantime, know that we are here to help you become as healthy and

comfortable as you can be- and learn to live with Chronic illness.  It's not an

easy path-- in fact, if it was a ski run- it'd be a black diamond- so do

remember that we are a SUPPORT GROUP and will extend a helping hand and open

heart to each and every member-- without judgement.  NO question is dumb, and

we all start this journey at an uninformed place-- it's wonderful tat we don't

have to stay there.

>

> Blessings to all,

> Tracie

> NS Co-owner/moderator

>

>

>

>

> ________________________________

>

> To: " neurosarcoidosis " <neurosarcoidosis >

> Sent: Sat, March 20, 2010 3:21:34 PM

> Subject: RE: Need Advice new member

>

>  

> Hello and welcome to the group.

>  

> What is it you want your physicians to do that they aren't doing? Are you

going to your visits as a passenger or

> as a driver? Personally I've found when I go to 'see what happens' it isn't

always what I want. When I go with a

> list of bullet points of questions or issues I'd like addressed they usually

are. I'm not sure what you're wanting

> but are you sure the doctor is?

>  

> If a Family Practice doctor was interested enough in sarcoid to be able

to treat it one stop shopping style why

> wouldn't they be a specialist making the big bucks? Are there any doctors of

internal medicine with a specialty

> in pulmonology near you?

>  

> Sorry if I got it all wrong. I just can't understand how to find a

generalist who is a specialist either. It seems

> like a contradiction in terms. Maybe someone has other ideas.

>  

>  

> Cheers,

> Darrin

>

>

>  

>

> ________________________________

> To: Neurosarcoidosis@ yahoogroups. com

> From: almelissa (AT) yahoo (DOT) com

> Date: Sat, 20 Mar 2010 21:31:29 +0000

> Subject: Need Advice new member

>

>  

> I was diagnosed with Sarcoid 12/09. My symptoms started back in September. It

started with severe neck and back pain, then numbness in my fingers which slowly

spread up my arm to my torso. It was the strangest thing. I then developed Bells

Palsy on the left side of my face. That is when I went to my 3rd doctor to try

and find out what was wrong with me. GP asked for complete family history and my

sister has sarcoid. Thank God she has been symtom free for over 9 years. The

doctor decided to order a ACE level. Well my results were very high 129. My

doctor didn't want to do much she treated my Bell's Palsy with steroids and

thankfully my Bell's Palsy went away. I asked for a chest x-ray and it showed

Hilar Adenopathy but just on the right lung. I then saw a pulmonoligist. At that

point I did not have any pulmonary symptoms. I live in Arizona and went to

Sedona for a few days and the elevation is very high and found that I was

getting short of breath. I told

> my pulmonoligist this and he really did not say to much. Anyways recently I

developed sarcoid in the right eye. My eye was red it didn't hurt was a little

sore. I was hoping it was pink eye. It wasn't so I have been using prednisone

eye drops for 3 weeks now. My opthamologist suggested that I get a MRI of my

brain to rule out cerebral vasculitis. I have my MRI in 2 1/2 weeks. I just feel

like I can not find a doctor who will help me. My sister has a great doctor in

new york. He is a internal medicine doctor who has a specialty in pulmonology.

How can I find a Family Practice doctor who truly understands sarcoid without

having to go to see a opthamologist, pulmonoligist. ....etc

>

> Thanks

>

>

[Guest guest]

Hi Rach,

Wow, sounds like our journey is much the same.

The first neuro didn't seem to believe there was a problem at all. When he asked me to walk down the hall

to check my gait and I hobbled like an old man with my legs tied together he actually said to me,'NO walk NORMAL'.

I just looked at him stunned.

He looked at my brain mri but when I came back with the thoracic and lumbar he didn't even look at them. He just

read the report done by the mri technician and basically told me to get out of his office and not come back.

The mri machine was the lowest, weakest machine possible. It is apparently one of the first made. If I can

manage to afford it they should probably be run all over again with a better machine and better neuro. I hate

that some will waste our time, money, and energy when there's a clock ticking and we're continuing to progress.

The new neuro spotted major deficits immediately just with the office coordination tests and took charge, ordering

test after test. Not having insurance it has been a challenge for me to keep up with her financially but we're going

in the right direction.

Honestly, she's such a breath of fresh air and I feel someone is on my side now instead of against me. When I told

her my sx and everything I said meant something important to her rather than discounting and explaining away I could

have cried.

My pc had commented on a chest x ray that my heart and bronchi appear strangely enlarged and said he didn't

know what that's about. My paraneoplastic syndrome tests were negative suggesting my symptoms are not a reaction

to cancer so I really need to have the new specialist look at those films.

I'm not looking for sympathy just explaining my perspective and hoping someone else may identify with or benefit

somehow from what has happened with me. Nine days until my next appointment and I'm like a 5 year old watching

paint dry. Thanks Rach for letting me know your journey has been not unlike my own.

Cheers,

Darrin

To: Neurosarcoidosis From: stiks11@...Date: Sun, 21 Mar 2010 07:45:46 +0000Subject: Re: Need Advice new member (MRIs)

MRIs I think are the enemy of NS! My first MRIs when I got sick showed activity. Its been 8 years so I can't remember exactly, but I remember it said not typical for demylination (so ruled out MS) but could have meant all sorts of other things. It showed the same thing several times. That neurologist then tried to tell me that it was probably a fault in the MRI - even though they were taken in different machines.I then changed neurologist. The radiology report said my next MRI was clear, but my neuro ran over it with a fine tooth comb and found tiny spots of white matter damage - thank goodness for him. But any other dr who looked said "ALL CLEAR".What was on my side (well if there is a positive) is that I had an abnormal VER, abnormal lumbar puncture, abnormal reflexes, so my neurologists knew there was something wrong at least. (and yes I'm the one who was misdiagnosed with MS)BUT I mean to say if that MRI is clear, and you are numb, tingling, weak - PUSH for other tests which can show there is something going on.RachPS: I hope this is okay to say its the first time I've responded with info.>> Darin, lighten up! We aren't here to judge others, and the choices they make-- I really got the feeling of sarcasm from your post-- and we get enough of that from family and friends. > > When we are new to this disease, not only do we NOT know what to expect from our docs, we also have a disease where the docs-- including most "specialists" may only see 1-3 cases of sarcoidosis in their entire career. So, even the specialists are at a loss as to what and how to treat our sarcoidosis.> > The common approach is to treat with prednisone. When we bring in the fact that we are having short-term memory loss, or pain in our hands and feet, and swollen joints and muscles, most of us are diagnosed with arthritis. When the ESR comes back in normal range (Erythocyte Sedimentation Rate that tells them if we have rheumatoid arthritis) they blow us off as depressed or with the catch all of fibromyalgia. (Most docs still think Fibro is in our heads also...) > > You'll also find that even if the chest xray shows the "ground glass" appearance, the pulmonologist will think sarcoidosis, but they also lean to the general rule of thumg-- sarcoidosis will burn itself out in a couple of years-- and they will argue with you that the other body and mind issues are not at all related to sarcoidosis. They also lean to the diet/weight issues, so if you are overweight-- get some exercise and change your diet- and that issue will go away. They don't put it together that because of systemic body pain and shortness of breath that this is related to sarcoidosis. Sadly, way too many of the GP's and the specialists will go here first. > > We end up being our best advocate-- and we have to go in armed with information so that they can help us. Fortunately, over the past 10 years, there have been several groups and sites that have come out and can help TEACH each person how to live as well as possible with sarcoidosis. > > As for knowing what to ask your doctor to do-- how in the world would you know if you've never even heard of this disease before you were diagnosed, and if you are one that has only Neurosarc, or ocular involvement, or just pulmonary involvement-- it is a matter of eliminating ALL the other autoimmune processes and arthritises, before our docs come up with answers. > > For instance, my neurologist swore I did not have NS. Neurosarcoidosis includes both the peripheral nervous system as well as the central nervous system. Neurologists have long thought that if you don't have any granulomas showing up on brain scans-- that you don't have NS. New studies show that even a clear CT of the brain does not rule out NS. A clear spinal tap does not mean that you don't have NS. > > Sarcoidosis is a systemic inflamatory disease-- and they don't know what causes it. Best we can do is treat the symptoms- and hope that our sarcoidosis does not progress. > > It is important that we realize that our docs are good at treating diabetes, high blood pressure, heart disease, and acute health issues-- flu, sinus infections-- etc-- but since they see so little sarcoidosis-- they really don't follow up with it-- and most medical groups want their doctors to see 5 patients per hour-- so they do what they can. Sadly, they also walk into the exam room, and look at you, within the first minute or so-- they've decided what you have-- and in so many cases-- we're given an anti-inflamatory, or pain meds-- and sent on our way. > > We have a list of the tests that should be run-- and many sites referenced for your use. WWW.SARCOIDOSISSHARMA.COM is excellant. Dr. Sharma is a critical care, pulmonologist at USC-LA. He has also spent his entire medical career trying to find the answers to treating sarcoidosis. WWW.FSR.ORG  Foundation for sarcoidosis research is also excellant-- www.arthritistoday.org is also excellant for information on different medications-- we use their Drug Guide and Vitamin/Mineral Guide often as references. > > I'll try to find some prior posts that do have the list of tests, etc that you can talk to your docs about. > > In the meantime, know that we are here to help you become as healthy and comfortable as you can be- and learn to live with Chronic illness. It's not an easy path-- in fact, if it was a ski run- it'd be a black diamond- so do remember that we are a SUPPORT GROUP and will extend a helping hand and open heart to each and every member-- without judgement. NO question is dumb, and we all start this journey at an uninformed place-- it's wonderful tat we don't have to stay there.> > Blessings to all,> Tracie > NS Co-owner/moderator> > > > > ________________________________> > To: "neurosarcoidosis " <neurosarcoidosis >> Sent: Sat, March 20, 2010 3:21:34 PM> Subject: RE: Need Advice new member> >  > Hello and welcome to the group.>  > What is it you want your physicians to do that they aren't doing? Are you going to your visits as a passenger or> as a driver? Personally I've found when I go to 'see what happens' it isn't always what I want. When I go with a> list of bullet points of questions or issues I'd like addressed they usually are. I'm not sure what you're wanting> but are you sure the doctor is?>  > If a Family Practice doctor was interested enough in sarcoid to be able to treat it one stop shopping style why> wouldn't they be a specialist making the big bucks? Are there any doctors of internal medicine with a specialty> in pulmonology near you? >  > Sorry if I got it all wrong. I just can't understand how to find a generalist who is a specialist either. It seems> like a contradiction in terms. Maybe someone has other ideas.>  >  > Cheers,> Darrin> > >  > > ________________________________> To: Neurosarcoidosis@ yahoogroups. com> From: almelissa (AT) yahoo (DOT) com> Date: Sat, 20 Mar 2010 21:31:29 +0000> Subject: Need Advice new member> >  > I was diagnosed with Sarcoid 12/09. My symptoms started back in September. It started with severe neck and back pain, then numbness in my fingers which slowly spread up my arm to my torso. It was the strangest thing. I then developed Bells Palsy on the left side of my face. That is when I went to my 3rd doctor to try and find out what was wrong with me. GP asked for complete family history and my sister has sarcoid. Thank God she has been symtom free for over 9 years. The doctor decided to order a ACE level. Well my results were very high 129. My doctor didn't want to do much she treated my Bell's Palsy with steroids and thankfully my Bell's Palsy went away. I asked for a chest x-ray and it showed Hilar Adenopathy but just on the right lung. I then saw a pulmonoligist. At that point I did not have any pulmonary symptoms. I live in Arizona and went to Sedona for a few days and the elevation is very high and found that I was getting short of breath. I told> my pulmonoligist this and he really did not say to much. Anyways recently I developed sarcoid in the right eye. My eye was red it didn't hurt was a little sore. I was hoping it was pink eye. It wasn't so I have been using prednisone eye drops for 3 weeks now. My opthamologist suggested that I get a MRI of my brain to rule out cerebral vasculitis. I have my MRI in 2 1/2 weeks. I just feel like I can not find a doctor who will help me. My sister has a great doctor in new york. He is a internal medicine doctor who has a specialty in pulmonology. How can I find a Family Practice doctor who truly understands sarcoid without having to go to see a opthamologist, pulmonoligist. ....etc> > Thanks> >

[Guest guest]

I thought I had replied to this but it's not showing up.

> >

> > Darin, lighten up! We aren't here to judge others, and the choices they

make-- I really got the feeling of sarcasm from your post-- and we get enough of

that from family and friends.Â

> >

> > When we are new to this disease, not only do we NOT know what to expect from

our docs, we also have a disease where the docs-- including most " specialists "

may only see 1-3 cases of sarcoidosis in their entire career. So, even the

specialists are at a loss as to what and how to treat our sarcoidosis.

> >

> > The common approach is to treat with prednisone. When we bring in the fact

that we are having short-term memory loss, or pain in our hands and feet, and

swollen joints and muscles, most of us are diagnosed with arthritis. When the

ESR comes back in normal range (Erythocyte Sedimentation Rate that tells them if

we have rheumatoid arthritis) they blow us off as depressed or with the catch

all of fibromyalgia. (Most docs still think Fibro is in our heads also...)

> >

> > You'll also find that even if the chest xray shows the " ground glass "

appearance, the pulmonologist will think sarcoidosis, but they also lean to the

general rule of thumg-- sarcoidosis will burn itself out in a couple of years--

and they will argue with you that the other body and mind issues are not at all

related to sarcoidosis. They also lean to the diet/weight issues, so if you

are overweight-- get some exercise and change your diet- and that issue will go

away. They don't put it together that because of systemic body pain and

shortness of breath that this is related to sarcoidosis. Sadly, way too many

of the GP's and the specialists will go here first.Â

> >

> > We end up being our best advocate-- and we have to go in armed with

information so that they can help us. Fortunately, over the past 10 years,

there have been several groups and sites that have come out and can help TEACH

each person how to live as well as possible with sarcoidosis.Â

> >

> > As for knowing what to ask your doctor to do-- how in the world would you

know if you've never even heard of this disease before you were diagnosed, and

if you are one that has only Neurosarc, or ocular involvement, or just pulmonary

involvement-- it is a matter of eliminating ALL the other autoimmune processes

and arthritises, before our docs come up with answers.Â

> >

> > For instance, my neurologist swore I did not have NS. Neurosarcoidosis

includes both the peripheral nervous system as well as the central nervous

system. Neurologists have long thought that if you don't have any granulomas

showing up on brain scans-- that you don't have NS. New studies show that even

a clear CT of the brain does not rule out NS. A clear spinal tap does not mean

that you don't have NS.Â

> >

> > Sarcoidosis is a systemic inflamatory disease-- and they don't know what

causes it. Best we can do is treat the symptoms- and hope that our sarcoidosis

does not progress.Â

> >

> > It is important that we realize that our docs are good at treating diabetes,

high blood pressure, heart disease, and acute health issues-- flu, sinus

infections-- etc-- but since they see so little sarcoidosis-- they really don't

follow up with it-- and most medical groups want their doctors to see 5 patients

per hour-- so they do what they can. Sadly, they also walk into the exam room,

and look at you, within the first minute or so-- they've decided what you have--

and in so many cases-- we're given an anti-inflamatory, or pain meds-- and sent

on our way.Â

> >

> > We have a list of the tests that should be run-- and many sites referenced

for your use. WWW.SARCOIDOSISSHARMA.COM is excellant. Dr. Sharma is a

critical care, pulmonologist at USC-LA. He has also spent his entire medical

career trying to find the answers to treating sarcoidosis. WWW.FSR.ORG Â

Foundation for sarcoidosis research is also excellant-- www.arthritistoday.org

is also excellant for information on different medications-- we use their Drug

Guide and Vitamin/Mineral Guide often as references.Â

> >

> > I'll try to find some prior posts that do have the list of tests, etc that

you can talk to your docs about.

> >

> > In the meantime, know that we are here to help you become as healthy and

comfortable as you can be- and learn to live with Chronic illness. It's not an

easy path-- in fact, if it was a ski run- it'd be a black diamond- so do

remember that we are a SUPPORT GROUP and will extend a helping hand and open

heart to each and every member-- without judgement. NO question is dumb, and

we all start this journey at an uninformed place-- it's wonderful tat we don't

have to stay there.

> >

> > Blessings to all,

> > Tracie

> > NS Co-owner/moderator

> >

> >

> >

> >

> > ________________________________

> > From: Darrin Vernier <gphx@>

> > To: " neurosarcoidosis " <neurosarcoidosis >

> > Sent: Sat, March 20, 2010 3:21:34 PM

> > Subject: RE: Need Advice new member

> >

> > Â

> > Hello and welcome to the group.

> > Â

> > What is it you want your physicians to do that they aren't doing? Are you

going to your visits as a passenger or

> > as a driver? Personally I've found when I go to 'see what happens' it isn't

always what I want. When I go with a

> > list of bullet points of questions or issues I'd like addressed they usually

are. I'm not sure what you're wanting

> > but are you sure the doctor is?

> > Â

> > If a Family Practice doctor was interested enough in sarcoid to be able toÂ

treat it one stop shopping style why

> > wouldn't they be a specialist making the big bucks? Are there any doctors of

internal medicine with a specialty

> > in pulmonology near you?

> > Â

> > Sorry if I got it all wrong. I just can't understand how to find a

generalist who is a specialist either. It seems

> > like a contradiction in terms. Maybe someone has other ideas.

> > Â

> > Â

> > Cheers,

> > Darrin

> >

> >

> > Â

> >

> > ________________________________

> > To: Neurosarcoidosis@ yahoogroups. com

> > From: almelissa (AT) yahoo (DOT) com

> > Date: Sat, 20 Mar 2010 21:31:29 +0000

> > Subject: Need Advice new member

> >

> > Â

> > I was diagnosed with Sarcoid 12/09. My symptoms started back in September.

It started with severe neck and back pain, then numbness in my fingers which

slowly spread up my arm to my torso. It was the strangest thing. I then

developed Bells Palsy on the left side of my face. That is when I went to my 3rd

doctor to try and find out what was wrong with me. GP asked for complete family

history and my sister has sarcoid. Thank God she has been symtom free for over 9

years. The doctor decided to order a ACE level. Well my results were very high

129. My doctor didn't want to do much she treated my Bell's Palsy with steroids

and thankfully my Bell's Palsy went away. I asked for a chest x-ray and it

showed Hilar Adenopathy but just on the right lung. I then saw a pulmonoligist.

At that point I did not have any pulmonary symptoms. I live in Arizona and went

to Sedona for a few days and the elevation is very high and found that I was

getting short of breath. I told

> > my pulmonoligist this and he really did not say to much. Anyways recently I

developed sarcoid in the right eye. My eye was red it didn't hurt was a little

sore. I was hoping it was pink eye. It wasn't so I have been using prednisone

eye drops for 3 weeks now. My opthamologist suggested that I get a MRI of my

brain to rule out cerebral vasculitis. I have my MRI in 2 1/2 weeks. I just feel

like I can not find a doctor who will help me. My sister has a great doctor in

new york. He is a internal medicine doctor who has a specialty in pulmonology.

How can I find a Family Practice doctor who truly understands sarcoid without

having to go to see a opthamologist, pulmonoligist. ....etc

> >

> > Thanks

> >

> >

>

[Guest guest]

Hello,

I too strongly believe in the 'use it or lose it' philosophy. I walk nearly every day.

Results are highly variable. I've learned that when pain starts if I keep going it

often goes away just as quickly. I've learned that when I feel weak and like I

can't take another step I just tell myself to take one more and keep doing that

over and over again until I've gone much farther than I thought I could.

I've had significant walking issues several times in the past (always thought it

was a slipped disc or something) and walked myself back every time. Nowadays

there seems to be a 'new normal' and no getting back to what I once was but

it is kind of nice that I used to have to drive a long way to be challenged by

mountains but now I can be challenged by my neighborhood and front stairs.

Whether I walk or not is one of the few things I can control and it is probably

even better for me psychologically. I try not to stop because when I do the

burning pains start and they take a long time to go away but I don't mind much

anymore because it just reminds me I did what I set out to do, and makes me

all the more defiant.

Some people ask 'why me'. I know this was given to me because I'm an ornery

cuss and sometimes I just don't care. If life gives us lemons we just make

lemonade. Make it harder and I'll just feel better when I manage to do it anyway.

May every day find us able to not dwell on our losses but take pride in our

accomplishments.

Cheers,

Darrin

To: Neurosarcoidosis From: mebramer@...Date: Tue, 23 Mar 2010 09:47:33 -0600Subject: Re: Re: Need Advice new member (MRIs)

I do wish we had more docs that would just listen, and when you find one that listens to you, and then tests, that's great. My Neuro just did reaction tests himself, and told me I had neruosarcoid, then he ordered an MRI, telling me he didn't expect to see much but wanted to rule out any masses, he right away did not think it was MS. The MRI didn't show anything, but the fact that I couldn't walk without a cane, did show something. This was when we were fighting for Remicade, his letter was a big help. He told me to use it as long as I can, because if I don't use it, I will lose it! So keep using what ever you have left as long as you can, don't give up on yourself ever! Finding a good doctor is not easy, even when you have a firm Sarcoidosis Dx. I did, and the fist Neuro I saw in a big city, told me she just wasn't sure if I had it or not, as the tests were all good, but I was still numb on my entire left side?? That is still my worse side, but now it's both legs. Don't ever, ever give up on you, you are the only one that can truly fight for you. you know how you feel, and what works and what doesn't. (walk normal:) what did he think you were doing???) Blessings, Marla