Re: Re: Roll Call, please.............

[Guest guest]

would u mind calling me at i have some info u need but my

computer is down and answering emails on my ph is too hard u can ck with

darlene i'm straight up and i'm a social security med adjudicator

----------

Sent from AT & T's Wireless network using Mobile Email

- Re: Roll Call, please.............

Hi ,

Thanks for posting. I am so sorry you are going through all of this. It

seems

like we all take one step forward and two backward sometimes. Hang in there

and keep the faith.........HE will provide. Sometimes we wonder " Why us and why

now? " but I firmly believe there is a reason and some day we will know. In the

meantime, keep fighting!!!!

Hugs,

Darlene

NS Co-Owner/Moderator

Roll Call, please.............

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,

Darlene

NS Co-Owner/Moderator

[Guest guest]

pls help ur fiancee find a different dr we live all over the place

someone may know a good dr n ur area

----------

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- Re: Roll Call, please.............

Hi ,

Thank you so much for being there for your fiance. It makes all the

difference in the world having someone close who believes in you and

wants to help. Some of those with Sarc do not have that. I am so

lucky that I have a wonderful husband and 5 grown children who are

my support.

As for your fiance (what is his name? Don't want to call him fiance all

the time) :-). I would advise him to get a different Doctor. If his Doctor is

not

willing to check things out, then he needs to find one that is willing.

Please keep us informed and thank you for answering the roll call. Sending

best wishes to both.

Hugs,

Darlene

NS Co-Owner/Moderator

Re: Roll Call, please.............

I () am on here not because I hae sarc but because my fiance does and I

update him and hearing from other helps me comfort him to let him know that he

is not alone and I research about situations, etc. Recently he went to a

Rheumatologist and she found some lumps on his head he contacted the pulmologist

that he sees to get a CAT scan he he denied it. I was like what in the world. So

now the Rhematologist thinks that he may have Neuroscarcoidosis he is

pulmologist will not let her check. Not sure what to do. Any advice?

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early)

and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he

says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,

Darlene

NS Co-Owner/Moderator

--

Zimmerman

andrea.d.zimmerman@...

[Guest guest]

My pulm called a sarc spec up north that she knows when she ran out of options

and he recommended chorloquine 250 mg plus 10 mg of pred so far it seems 2 b

working

----------

Sent from AT & T's Wireless network using Mobile Email

- Roll Call, please.............

To: neurosarcoidosis

Date: Monday, September 13, 2010, 5:53 AM

 

Hi everyone,

      Hey, it is nearly Fall so let's start a new season (a little early)

and

have a really good Roll Call.  We have 600+ members and the list

is sooooo quiet!  This worries all of your Owners and Moderators --

as we really do worry about each and every one of you.  We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc. 

 

      Please just take a moment and post how you are.  You don't have

to write a book -- unless you want too!  :-)

 

      I will start ----  About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October.  Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc.  You

get the message.  When I go off Imuran, I will have no immuneoppresents

(sp) at all!   This worries me.  I tried to argue with the Doctor, but he

says

he is worried about this drug damaging my liver..... 

 

      Any comments will be appreciated.  Thanks.

Hugs,

Darlene

NS Co-Owner/Moderator

[Guest guest]

Thanks, of course, Connie -- I will call you!! God bless!!To: Neurosarcoidosis Sent: Mon, September 13, 2010 8:08:43 PMSubject: Re: Re: Roll Call, please.............

would u mind calling me at i have some info u need but my computer is down and answering emails on my ph is too hard u can ck with darlene i'm straight up and i'm a social security med adjudicator

----------

Sent from AT & T's Wireless network using Mobile Email

- Re: Roll Call, please.............

Hi ,

Thanks for posting. I am so sorry you are going through all of this. It seems

like we all take one step forward and two backward sometimes. Hang in there

and keep the faith.........HE will provide. Sometimes we wonder "Why us and why

now?" but I firmly believe there is a reason and some day we will know. In the

meantime, keep fighting!!!!

Hugs,

Darlene

NS Co-Owner/Moderator

Roll Call, please.............

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,

Darlene

NS Co-Owner/Moderator

[Guest guest]

Ok i'm trying this on my ph karen go to the website needymeds.org there is

no obligation, u don't have to join anything u jurt have 2 have no ins that

will pay 4 ur meds the site is run by the different pharm copanies it is

real easy 2 get started an the is usually 0.00 4 a 3 mths supply /and no that

is not a typo/ the most i have ever seen a 3 mths supply cost is 6.50 they

send my niece 345.00 worth of meds - no chg she lives on her on and her job

doesn't have benefits and my brothers job ins wouldn't let hIm carry her

----------

Sent from AT & T's Wireless network using Mobile Email

- Re: Roll Call, please.............

>To: Neurosarcoidosis

>Date: Monday, September 13, 2010, 7:41 PM

>

>

>

>

>Hi ,

> Thanks for posting. I am so sorry you are going through all of this.

It

>seems

>like we all take one step forward and two backward sometimes. Hang in there

>and keep the faith.........HE will provide. Sometimes we wonder " Why us and

>why

>

>now? " but I firmly believe there is a reason and some day we will know. In

the

>

>meantime, keep fighting!!!!

>Hugs,

>Darlene

>NS Co-Owner/Moderator

>

>

>

>

>

>

> Roll Call, please.............

>>

>>

>>Hi everyone,

>> Hey, it is nearly Fall so let's start a new season (a little early)

and

>>

>>have a really good Roll Call. We have 600+ members and the list

>>is sooooo quiet! This worries all of your Owners and Moderators --

>>as we really do worry about each and every one of you. We need to

>>know if you are ok; or very ill; latest in your life; in remission and too

>>busy having fun to post; etc.

>>

>> Please just take a moment and post how you are. You don't have

>>to write a book -- unless you want too! :-)

>>

>> I will start ---- About 6 weeks ago, my Doctor decided he wanted to

>>take me off some of my meds........so he has cut my Imuran in half again

>>and plans to take me off it completely the middle of October. Since I

>>started this, my severe headaches have returned; I ache all over --

muscles,

>>joints, all over; I am nauseated all the time; want to sleep ALL the time;

>>have absolutely NO energy at all; have off and on diahreah, and etc. You

>>get the message. When I go off Imuran, I will have no immuneoppresents

>>(sp) at all! This worries me. I tried to argue with the Doctor, but he

>>says

>>

>>he is worried about this drug damaging my liver.....

>>

>> Any comments will be appreciated. Thanks.

>>Hugs,

>>Darlene

>>NS Co-Owner/Moderator

>>

[Guest guest]

Bravo Get em jackie i agree 110 percent

----------

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- Re: Roll Call, please.............

I am on board here. They have to want to help me Not the other way. I pay

them so study up Doc cause here I come and I have a plethora of questions.

Jackie

Roll Call, please.............

To: neurosarcoidosis

Date: Monday, September 13, 2010, 5:53 AM

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little

early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission

and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't

have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he

wanted to

take me off some of my meds........so he has cut my Imuran in half

again

and plans to take me off it completely the middle of October. Since

I

started this, my severe headaches have returned; I ache all over --

muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the

time;

have absolutely NO energy at all; have off and on diahreah, and etc.

You

get the message. When I go off Imuran, I will have no

immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor,

but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,

Darlene

NS Co-Owner/Moderator

[Guest guest]

R u on ssi/ssd yet if i can help look at my replies to karen and u'll find how

2 reach me i'm a med disability determiner/adjudicator if there is anything

i can do to help it would b my pleasure

----------

Sent from AT & T's Wireless network using Mobile Email

- Re: Roll Call, please.............

Still alive, rough year. In ICCU 3 times plus surgery, blood transfusion,

pericarditis. Sarc is in MAJOR flare right now after surgery, everything is

lighting up. Trying to hang in there. Not immunosuppressed at the moment. Taking

anti-seizure, anti-anxiety and pain killers. No insurance so trying to get help.

Read email daily just do not have anything to add that would not just be me

whining at this point. I pray for everyone I see struggling on here.

>

[Guest guest]

My gastric dr said the sarc was n my esophagus was why i was having trouble

swallowing when i had the 1st bronchoscopy they found it n the bronchials and

the esophagus not to mention all the other places it decided 2 take up

residence

----------

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- Re: Roll Call, please.............

Hi,

Since moving back to my hometown at the end of July, I have been really busy

catching up on - everything! This has been putting a strain on me and in the

last few weeks it's really caught up, my balance is off and the fatigue is so

bad that for every day I'm up, I need a day in bed.

I saw my neuro last week and we are going to start methylpred once a month

again.

I have had a constant feeling of a lump in my throat for sometime, and asked him

about this. He said he would probably refer me back to the respiratory dr's at

the hospital I go to, but to get the ball rolling sent me for some bloods, a

chest x-ray and this week I'm having a lung function test...

.... does anyone know what that has to do with a lump in the throat or has anyone

experienced the same...

Rach

>

> Hi everyone,

> Hey, it is nearly Fall so let's start a new season (a little early) and

> have a really good Roll Call. We have 600+ members and the list

> is sooooo quiet! This worries all of your Owners and Moderators --

> as we really do worry about each and every one of you. We need to

> know if you are ok; or very ill; latest in your life; in remission and too

> busy having fun to post; etc.

>

> Please just take a moment and post how you are. You don't have

> to write a book -- unless you want too! :-)

>

> I will start ---- About 6 weeks ago, my Doctor decided he wanted to

> take me off some of my meds........so he has cut my Imuran in half again

> and plans to take me off it completely the middle of October. Since I

> started this, my severe headaches have returned; I ache all over -- muscles,

> joints, all over; I am nauseated all the time; want to sleep ALL the time;

> have absolutely NO energy at all; have off and on diahreah, and etc. You

> get the message. When I go off Imuran, I will have no immuneoppresents

> (sp) at all! This worries me. I tried to argue with the Doctor, but he says

> he is worried about this drug damaging my liver.....

>

> Any comments will be appreciated. Thanks.

> Hugs,

> Darlene

> NS Co-Owner/Moderator

>

[Guest guest]

Sweetie, this group support is for you to.. so what if have to whine every now and again, they let me whine every now and again, and ROSE! She whines all the time.. ha, just kidding Rose... whine way baby that's why wer're here..

Hugs, and best wishes, oops, that's a Dean.. but I can cook like her... NOT I can't cook hot water.. just ask my mom..

Hugs for sure,

NS Moderator

Re: Roll Call, please.............

Still alive, rough year. In ICCU 3 times plus surgery, blood transfusion, pericarditis. Sarc is in MAJOR flare right now after surgery, everything is lighting up. Trying to hang in there. Not immunosuppressed at the moment. Taking anti-seizure, anti-anxiety and pain killers. No insurance so trying to get help. Read email daily just do not have anything to add that would not just be me whining at this point. I pray for everyone I see struggling on here.>

[Guest guest]

Rach, have they considered a swallowing study?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Tue, 14 Sep 2010 02:30:00 +0000> Subject: Re: Roll Call, please.............> > Hi,> > Since moving back to my hometown at the end of July, I have been really busy catching up on - everything! This has been putting a strain on me and in the last few weeks it's really caught up, my balance is off and the fatigue is so bad that for every day I'm up, I need a day in bed.> > I saw my neuro last week and we are going to start methylpred once a month again. > > I have had a constant feeling of a lump in my throat for sometime, and asked him about this. He said he would probably refer me back to the respiratory dr's at the hospital I go to, but to get the ball rolling sent me for some bloods, a chest x-ray and this week I'm having a lung function test... > > ... does anyone know what that has to do with a lump in the throat or has anyone experienced the same...> > Rach> > > >> > Hi everyone,> > Hey, it is nearly Fall so let's start a new season (a little early) and > > have a really good Roll Call. We have 600+ members and the list > > is sooooo quiet! This worries all of your Owners and Moderators --> > as we really do worry about each and every one of you. We need to> > know if you are ok; or very ill; latest in your life; in remission and too> > busy having fun to post; etc. > > > > Please just take a moment and post how you are. You don't have> > to write a book -- unless you want too! :-)> > > > I will start ---- About 6 weeks ago, my Doctor decided he wanted to> > take me off some of my meds........so he has cut my Imuran in half again> > and plans to take me off it completely the middle of October. Since I > > started this, my severe headaches have returned; I ache all over -- muscles,> > joints, all over; I am nauseated all the time; want to sleep ALL the time; > > have absolutely NO energy at all; have off and on diahreah, and etc. You> > get the message. When I go off Imuran, I will have no immuneoppresents> > (sp) at all! This worries me. I tried to argue with the Doctor, but he says > > he is worried about this drug damaging my liver..... > > > > Any comments will be appreciated. Thanks.> > Hugs,> > Darlene> > NS Co-Owner/Moderator> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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]

Thanks again, Connie! I will give you a call tomorrow when I feel a little better. I had just come in from obtaining energy assistant and my body was so tired. It is late now, so I will call you tomorrow. Thank God for you guys!! Love you much!!To: Neurosarcoidosis Sent:

Tue, September 14, 2010 6:45:57 PMSubject: Re: Re: Roll Call, please.............

Ok i'm trying this on my ph karen go to the website needymeds.org there is no obligation, u don't have to join anything u jurt have 2 have no ins that will pay 4 ur meds the site is run by the different pharm copanies it is real easy 2 get started an the is usually 0.00 4 a 3 mths supply /and no that is not a typo/ the most i have ever seen a 3 mths supply cost is 6.50 they send my niece 345.00 worth of meds - no chg she lives on her on and her job doesn't have benefits and my brothers job ins wouldn't let hIm carry her

----------

Sent from AT & T's Wireless network using Mobile Email

- Re: Roll Call, please.............

>To: Neurosarcoidosis

>Date: Monday, September 13, 2010, 7:41 PM

>

>

>

>

>Hi ,

> Thanks for posting. I am so sorry you are going through all of this. It

>seems

>like we all take one step forward and two backward sometimes. Hang in there

>and keep the faith.........HE will provide. Sometimes we wonder "Why us and

>why

>

>now?" but I firmly believe there is a reason and some day we will know. In the

>

>meantime, keep fighting!!!!

>Hugs,

>Darlene

>NS Co-Owner/Moderator

>

>

>

>

>

>

> Roll Call, please.............

>>

>>

>>Hi everyone,

>> Hey, it is nearly Fall so let's start a new season (a little early) and

>>

>>have a really good Roll Call. We have 600+ members and the list

>>is sooooo quiet! This worries all of your Owners and Moderators --

>>as we really do worry about each and every one of you. We need to

>>know if you are ok; or very ill; latest in your life; in remission and too

>>busy having fun to post; etc.

>>

>> Please just take a moment and post how you are. You don't have

>>to write a book -- unless you want too! :-)

>>

>> I will start ---- About 6 weeks ago, my Doctor decided he wanted to

>>take me off some of my meds........so he has cut my Imuran in half again

>>and plans to take me off it completely the middle of October. Since I

>>started this, my severe headaches have returned; I ache all over --

muscles,

>>joints, all over; I am nauseated all the time; want to sleep ALL the time;

>>have absolutely NO energy at all; have off and on diahreah, and etc. You

>>get the message. When I go off Imuran, I will have no immuneoppresents

>>(sp) at all! This worries me. I tried to argue with the Doctor, but he

>>says

>>

>>he is worried about this drug damaging my liver.....

>>

>> Any comments will be appreciated. Thanks.

>>Hugs,

>>Darlene

>>NS Co-Owner/Moderator

>>

[Guest guest]

Have u ever tried chlorquine i can't take methotrexate, plaquenil, or immuran

due 2 allergy but i can take chlorloquine w/out side effects and i'm down to

10Mg of pred the only reason i'm not totally off is my adrenal gland stopped

working

----------

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- Re: Roll Call, please.............

Hello,

I am doing okay. Hanging in there. Trying to get off the prednisone but

everytime I get to a point of reducing between 13 to 18 mg of prednisone

my eye vision for close acts up and I have to go back up. They want to put

me on Imuran but I see the side effects of that are worse most especially

since I have a job where I am the only employee and need to be at work every

single day as I do not have a back up.

I have had to learn to pace myself and rest at home in order to ensure I am

at work every day so you learn to give up a lot of things.

I am just grateful to all the people that helped me get back on my feet.

Kat

[Guest guest]

I'm sorry you've had such a tough year, but it's OK to come on and complain, whine, if it makes you feel good, most of us don't mind.  Wouldn't it be better to be on Immunosuppressants, then all the other meds that just treat the symptoms and not the disease??  I guess I don't see how you can get better without some kind of treatment? 

Well know we are here for you, hang in there, and hope you get some treatment soon. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

Still alive, rough year. In ICCU 3 times plus surgery, blood transfusion, pericarditis. Sarc is in MAJOR flare right now after surgery, everything is lighting up. Trying to hang in there. Not immunosuppressed at the moment. Taking anti-seizure, anti-anxiety and pain killers. No insurance so trying to get help. Read email daily just do not have anything to add that would not just be me whining at this point. I pray for everyone I see struggling on here.

>

[Guest guest]

Hi Kat, Good to hear from you, wow it's nice to hear from all of you, and glad to know you are at least hanging around, even if you don't have the energy to post.  Have you thought about Remicade,

or maybe you tired it, I can't remember who did and didn't I know some had bad reactions to it. It's been a life saver for me, and the side effects are not to bad.  I feel worse if I have to miss a dose, and then I play catch up.  Anyway, the worse s.e. I have is fatigue afterward, but not to the point I can't get up and do something the next day. 

My biggest problem is sleep, I need about 10-12 hours a sleep, if I don't get that for whatever reason, I feel like I'm getting the flu, and it just gets worse until I finally give in and sleep, and this is not related to the Remicade, it's Sarc.

Well hang in there, we're here for you, and good to hear from you. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

Hello,

I am doing okay.  Hanging in there.  Trying to get off the prednisone but everytime I get to a point of reducing  between 13 to 18 mg of prednisone my eye vision for close acts up and I have to go back up.  They want to put me on Imuran but I see the side effects of that are worse most especially since I have a job where I am the only employee and need to be at work every single day as I do not have a back up.

 

I have had to learn to pace myself and rest at home in order to ensure I am at work every day so you learn to give up a lot of things.

 

I am just grateful to all the people that helped me get back on my feet. 

 

Kat