Hot/cold

[Guest guest]

It has been a long hard road these past couple of years. I was dx in

1994 with sarcoid but did basically ok until July 2004 when I woke up

with severe arm pain (sheets even hurt to touch my skin). Has affected

many body systems. Over the past few months I have been having

" restless leg " (mostly left leg) type pain. In November 2005 I woke up

one morning with numbness to my right thumb and first two fingers.

That went away just a couple of months after being placed on

Minocycline (s Hopkins). Getting ready to have a implantable defib

placed since have evidence of cardiac involvement. I am (last worked

Sept. 2005)a nurse and greatly miss my job. In fact, I greatly miss a

lot of things. I do have a question: does anyone else have problems

with chills and sweats? I alternate hot/cold and it's almost always in

the afternoon. I have been on prednisone for 2+ years and will begin

Cellcept soon.

Thanks for listening.

Becky

[Guest guest]

HI Becky,

I was dx in 1994 too, but wasn’t

long before I flared, then went into remission, then flared remission and have

now been active since 2000, I too am a nurse but haven’t worked in the

hospital for 3 years now, and yes I do miss it. I am able to do some

teaching at a local community college and that’s been fun, and I have a

Kay business, that with my family, 3 kids, husband, 2 dogs and 2 lizards,

it keeps me too busy! I was put on plaquanil about 5 years ago, and then

Methotrexate about 3 years, they have been helpful. I have had just about

all the sx’s you stated and more, I tried the Minocycline, but it did not

do a thing for me. I was on steroids for 3 years, which was all I could

take of feeling psycho! I find I get hot if I get a little warm, I’m

HOT, if I get a little cold, I’m COLD, know what I mean, it’s

hard to be in the middle! I hope you do well with cellcept, and find the

information you need here, this is a great/awesome group of people here.

Blessings,

‘Marla

From:

Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of macandtosh626

Sent: Sunday, September 10, 2006

11:50 AM

To:

Neurosarcoidosis

Subject:

Hot/cold

It has been a long hard road these past couple of

years. I was dx in

1994 with sarcoid but did basically ok until July 2004 when I woke up

with severe arm pain (sheets even hurt to touch my skin). Has affected

many body systems. Over the past few months I have been having

" restless leg " (mostly left leg) type pain. In November 2005 I woke

up

one morning with numbness to my right thumb and first two fingers.

That went away just a couple of months after being placed on

Minocycline (s Hopkins).

Getting ready to have a implantable defib

placed since have evidence of cardiac involvement. I am (last worked

Sept. 2005)a nurse and greatly miss my job. In fact, I greatly miss a

lot of things. I do have a question: does anyone else have problems

with chills and sweats? I alternate hot/cold and it's almost always in

the afternoon. I have been on prednisone for 2+ years and will begin

Cellcept soon.

Thanks for listening.

Becky

[Guest guest]

Hi Marla,This is one strange disease! The hot/cold thing is fairly recent. I literally go from pouring sweat to freezing (teeth chattering) cold. After the plaquenil I was placed on methotrexate but couldn't tolerate that either. I'm hoping the cellcept will be ok. It takes at least 4 months to do anything so am crossing my fingers. I was astonished at the price but glad that I have insurance with a small co-pay. The minocycline helped (still does) with the skin and eye sarcoid, and the right thumb/fingers numbness (gone now). I pretty much am homebound b/c can't walk very far without extreme shortness of breath (could be r/t to the lung nodules or the cardiac sarcoid). One day at a time,Beckymarla bramer wrote: HI Becky, I was dx in 1994 too, but wasn’t long before I flared, then went into remission, then flared remission and have now been active since 2000, I too am a nurse but haven’t worked in the hospital for 3 years now, and yes I do miss it. I am able to do some teaching at a local community college and that’s been fun, and I have a Kay business, that with my family, 3 kids, husband, 2 dogs and

2 lizards, it keeps me too busy! I was put on plaquanil about 5 years ago, and then Methotrexate about 3 years, they have been helpful. I have had just about all the sx’s you stated and more, I tried the Minocycline, but it did not do a thing for me. I was on steroids for 3 years, which was all I could take of feeling psycho! I find I get hot if I get a little warm, I’m HOT, if I get a little cold, I’m COLD, know what I mean, it’s hard to be in the middle! I hope you do well with cellcept, and find the information you need here, this is a great/awesome group of people here. Blessings, ‘Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of macandtosh626 Sent: Sunday, September 10, 2006 11:50 AM To: Neurosarcoidosis Subject: Hot/cold It has been a long hard road these past couple of years. I was dx in 1994 with sarcoid but did basically ok until July 2004 when I woke up with severe arm pain (sheets even hurt to touch my skin). Has affected many body systems. Over the past few months I have been having "restless leg" (mostly left leg) type pain. In November 2005 I woke up one morning with numbness to my right thumb and first two fingers. That went away just a couple of months after being placed on Minocycline (s Hopkins). Getting ready to have a implantable defib placed since

have evidence of cardiac involvement. I am (last worked Sept. 2005)a nurse and greatly miss my job. In fact, I greatly miss a lot of things. I do have a question: does anyone else have problems with chills and sweats? I alternate hot/cold and it's almost always in the afternoon. I have been on prednisone for 2+ years and will begin Cellcept soon. Thanks for listening. Becky

Stay in the know. Pulse on the new Yahoo.com. Check it out.

[Guest guest]

The hot/cold thing is fairly recent. I literally go from pouring sweat to freezing (teeth chattering) cold. After the plaquenil I was placed on methotrexate but couldn't tolerate that either.

One of the biggest problems for me was that I am almost always running a low-grade fever due to the systemic inflammation. so my body thinks it's burning up. I do find that for a day or so following my MTX each week, that I run a fever of about 99.6, then go into chills. This subsides within 48 hrs. after the MTX.

I do know that part of the problem with the inflammation is that it wears you out totally-- because our immune system thinks it needs to heal us--but it uses the same process to heal us of the flu, vs. healing the sarcoidosis. This is a signal cross- that is attacking healthy tissue. Bummer.

Have they tried Imuran on you? If you go to ARTHRITIS.ORG and look up the Drug issue-- they've broken down the classes of meds- from NSAIDS to Cortisteroids to Immunosuppressants to Biological Response Modifiers as well as to Pain Meds. It give a great explanation of the use, side effects and how long it takes to show improvement.

Take care,

Tracie

NS Co-owner/moderator

[Guest guest]

Your right Becky one day at a time, I hope

the cellcept works for you without any side effects. Take care.

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Mac Tosh

Sent: Tuesday, September 12, 2006

4:21 AM

To: Neurosarcoidosis

Subject: RE:

Hot/cold

Hi Marla,

This is one strange disease! The hot/cold thing is fairly recent. I literally

go from pouring sweat to freezing (teeth chattering) cold. After the plaquenil

I was placed on methotrexate but couldn't tolerate that either. I'm hoping the

cellcept will be ok. It takes at least 4 months to do anything so am crossing

my fingers. I was astonished at the price but glad that I have insurance with a

small co-pay. The minocycline helped (still does) with the skin and eye

sarcoid, and the right thumb/fingers numbness (gone now). I pretty much am

homebound b/c can't walk very far without extreme shortness of breath (could be

r/t to the lung nodules or the cardiac sarcoid).

One day at a time,

Becky

marla bramer

<mebramer (AT) gmail (DOT) com> wrote:

HI Becky,

I was dx in 1994 too, but wasn’t

long before I flared, then went into remission, then flared remission and have

now been active since 2000, I too am a nurse but haven’t worked in the

hospital for 3 years now, and yes I do miss it. I am able to do some teaching

at a local community college and that’s been fun, and I have a Kay

business, that with my family, 3 kids, husband, 2 dogs and 2 lizards, it keeps

me too busy! I was put on plaquanil about 5 years ago, and then

Methotrexate about 3 years, they have been helpful. I have had just about

all the sx’s you stated and more, I tried the Minocycline, but it did not

do a thing for me. I was on steroids for 3 years, which was all I could

take of feeling psycho! I find I get hot if I get a little warm, I’m

HOT, if I get a little cold, I’m COLD, know what I mean, it’s

hard to be in the middle! I hope you do well with cellcept, and find the

information you need here, this is a great/awesome group of people here.

Blessings,

‘Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of macandtosh626

Sent: Sunday, September 10, 2006

11:50 AM

To: Neurosarcoidosis

Subject:

Hot/cold

It has been a long hard road these past couple of years. I was dx in

1994 with sarcoid but did basically ok until July 2004 when I woke up

with severe arm pain (sheets even hurt to touch my skin). Has affected

many body systems. Over the past few months I have been having

" restless leg " (mostly left leg) type pain. In November 2005 I woke

up

one morning with numbness to my right thumb and first two fingers.

That went away just a couple of months after being placed on

Minocycline (s Hopkins).

Getting ready to have a implantable defib

placed since have evidence of cardiac involvement. I am (last worked

Sept. 2005)a nurse and greatly miss my job. In fact, I greatly miss a

lot of things. I do have a question: does anyone else have problems

with chills and sweats? I alternate hot/cold and it's almost always in

the afternoon. I have been on prednisone for 2+ years and will begin

Cellcept soon.

Thanks for listening.

Becky

Stay in the know. Pulse on the new Yahoo.com. Check it

out.

[Guest guest]

I'm on the regular sarcoid webiste as well and there was an article posted there this week about WASOG( I think) world association for sarocid and granulomatous disease about finding small fiber neuropathy in sarcoid patients. This study was new and in it, they tested sarcoid patients and control people for temperature sensitivity and other thins. They found that small fiber neuropathy is COMMON in sarcoid patients!!! This is a new finding and maybe, at last, we can get some recognition that for use, everyday actions casue us pain, injury, dropping things( hello? ), lack of coordination, well, I oculd go on, but you all know how it affects us.

I f I was more computer literate, I would attach it. Don't know how, sorry.

Bonnie B