Re: New to the Board - Diagnosed 2 years ago

[Guest guest]

Good news, you're not alone any more! Sadly, your

story is like many of ours.

Cytoxan can help with the symptoms-- and that is good.

Generally what we find is that it takes a combination

of meds to get the sarc beast to slow it's

progression. As of yet, they still don't know what

causes sarcoidosis, so we don't have a " cure. "

Rheumatologists are a good place to start as they do

understand systemic inflammatory auto-immune diseases.

They also have a lot more knowledge in the use of the

" Biological " (BRM's) Response Modifier drugs.

What they do know about sarc is that there seems to be

a common link to agricultural dust, pesticides and a

genetic predisposition to auto-immune disease. They

think that we probably came into contact with some

type of rogue virus that turned our immune system on,

and now it won't shut down. So that is why we end up

on immunosuppressants.

There are many combinations that we are on.

Personally I'm on Plaquenil, Methotrexate and

Remicade. Others are on Imuran, Arava, Enbrel, Humira

and such.

BRM's actually block the TNF-A(alpha) which we produce

to much of. Our immune system sends out white cells

to fight infection or injury. Then it sends our

proteins in the form of TNFa and TNFb. One clears out

the white cells, then the next ( is supposed to

clear out the a cells. We end up building one on top

of the other-- and these form the granulomas. The

challenge is that as these build up the change the

structure of our organs and muscles and ligaments so

that the organs can't work correctly.

I'm sure you're aware that 80% of us end up with sarc

in our lungs- eyes and liver are the next highest

percentage of sarcoidians.

Do you have sarc in any other place than in your

brain?

So many times we end up being dx with arthritis, when

it is the sarcoid-induced. So if you are having

body/joint pain along with all the CNS stuff-- then a

Rheumi would definately be a very good choice. You

may want to call the MD that you've been referred to

and ask if he has experience with patients with sarc.

Let us know how we can help-- and again-- welcome to

the family. We sure wish no one had to be here...

Sincerely,

Tracie

NS Co-owner/moderator

--- mjluvsgolf wrote:

> Hi, I have looked for a msg. board for NS for a

> while and finally gave

> up until recently. I was diagnosed with NS 2 years

> ago and was put on

> prednisone (60 mg) and within 2 months doubled my

> weight (150 to 300

> lbs.). As my neurologist lowered the prednisone (too

> fast) I suffered a

> stroke. Two months later I broke my left leg. Six

> months after than

> developed seizures, had a brain biopsy. During all

> this time, I did

> start on chemo (cytoxan - 1800 ml every 3 weeks) and

> have continued the

> prednisone lowering the dose now to 20 mg. My last

> MRI isn't showing

> any improvement (although I feel better) or may even

> be worse. I'm at

> a loss. Has anyone else experienced these types of

> effects. I just

> feel so very isolated and alone in my situation, or

> do you have a

> suggestion as to where I can turn for help. My

> neurologist hasn't

> referred me to anyone except to a " specialist " at

> s Hopkins but he

> suggested a rheumatologist, she doesn't know any

> that she trusts to

> send me to.

>

>

[Guest guest]

Good news, you're not alone any more! Sadly, your

story is like many of ours.

Cytoxan can help with the symptoms-- and that is good.

Generally what we find is that it takes a combination

of meds to get the sarc beast to slow it's

progression. As of yet, they still don't know what

causes sarcoidosis, so we don't have a " cure. "

Rheumatologists are a good place to start as they do

understand systemic inflammatory auto-immune diseases.

They also have a lot more knowledge in the use of the

" Biological " (BRM's) Response Modifier drugs.

What they do know about sarc is that there seems to be

a common link to agricultural dust, pesticides and a

genetic predisposition to auto-immune disease. They

think that we probably came into contact with some

type of rogue virus that turned our immune system on,

and now it won't shut down. So that is why we end up

on immunosuppressants.

There are many combinations that we are on.

Personally I'm on Plaquenil, Methotrexate and

Remicade. Others are on Imuran, Arava, Enbrel, Humira

and such.

BRM's actually block the TNF-A(alpha) which we produce

to much of. Our immune system sends out white cells

to fight infection or injury. Then it sends our

proteins in the form of TNFa and TNFb. One clears out

the white cells, then the next ( is supposed to

clear out the a cells. We end up building one on top

of the other-- and these form the granulomas. The

challenge is that as these build up the change the

structure of our organs and muscles and ligaments so

that the organs can't work correctly.

I'm sure you're aware that 80% of us end up with sarc

in our lungs- eyes and liver are the next highest

percentage of sarcoidians.

Do you have sarc in any other place than in your

brain?

So many times we end up being dx with arthritis, when

it is the sarcoid-induced. So if you are having

body/joint pain along with all the CNS stuff-- then a

Rheumi would definately be a very good choice. You

may want to call the MD that you've been referred to

and ask if he has experience with patients with sarc.

Let us know how we can help-- and again-- welcome to

the family. We sure wish no one had to be here...

Sincerely,

Tracie

NS Co-owner/moderator

--- mjluvsgolf wrote:

> Hi, I have looked for a msg. board for NS for a

> while and finally gave

> up until recently. I was diagnosed with NS 2 years

> ago and was put on

> prednisone (60 mg) and within 2 months doubled my

> weight (150 to 300

> lbs.). As my neurologist lowered the prednisone (too

> fast) I suffered a

> stroke. Two months later I broke my left leg. Six

> months after than

> developed seizures, had a brain biopsy. During all

> this time, I did

> start on chemo (cytoxan - 1800 ml every 3 weeks) and

> have continued the

> prednisone lowering the dose now to 20 mg. My last

> MRI isn't showing

> any improvement (although I feel better) or may even

> be worse. I'm at

> a loss. Has anyone else experienced these types of

> effects. I just

> feel so very isolated and alone in my situation, or

> do you have a

> suggestion as to where I can turn for help. My

> neurologist hasn't

> referred me to anyone except to a " specialist " at

> s Hopkins but he

> suggested a rheumatologist, she doesn't know any

> that she trusts to

> send me to.

>

>

[Guest guest]

Hi Tracie. I'm MJ Whaley from Clayton, NC. Thanks for responding and providing some really great info. I wasn't aware of much of what you told me. So thank you. I am so hungry for information & to hear from others who understand what this is like. I have a tremendous difficulty with coming to terms with body image & not being able to work. I have worked since I was 14 and this disease has robbed me of my functionality to perform a regular job. In response to your question about other affected areas 8 years ago I was diagnosed with sarcoid of the lymph system and in my abdomen. Following a lymph biopsy I was put on a prednisone taper and nothing more was said or done until I developed it in my brain. tracie feldhaus wrote: Good news, you're not alone any more! Sadly, yourstory is like many of ours. Cytoxan can help with the symptoms-- and that is good.Generally what we find is that it takes a combinationof meds to get the sarc beast to slow it'sprogression. As of yet, they still don't know whatcauses sarcoidosis, so we don't have a "cure."Rheumatologists are a good place to start as they dounderstand systemic inflammatory auto-immune diseases.They also have a lot more knowledge in the use of the"Biological" (BRM's) Response Modifier drugs. What they do know about sarc is that there seems to bea common link to agricultural dust, pesticides and agenetic predisposition to

auto-immune disease. Theythink that we probably came into contact with sometype of rogue virus that turned our immune system on,and now it won't shut down. So that is why we end upon immunosuppressants.There are many combinations that we are on. Personally I'm on Plaquenil, Methotrexate andRemicade. Others are on Imuran, Arava, Enbrel, Humiraand such. BRM's actually block the TNF-A(alpha) which we produceto much of. Our immune system sends out white cellsto fight infection or injury. Then it sends ourproteins in the form of TNFa and TNFb. One clears outthe white cells, then the next ( is supposed toclear out the a cells. We end up building one on topof the other-- and these form the granulomas. Thechallenge is that as these build up the change thestructure of our organs and muscles and ligaments sothat the organs can't work correctly.I'm sure you're aware that 80% of us end up with sarcin our

lungs- eyes and liver are the next highestpercentage of sarcoidians. Do you have sarc in any other place than in yourbrain? So many times we end up being dx with arthritis, whenit is the sarcoid-induced. So if you are havingbody/joint pain along with all the CNS stuff-- then aRheumi would definately be a very good choice. Youmay want to call the MD that you've been referred toand ask if he has experience with patients with sarc.Let us know how we can help-- and again-- welcome tothe family. We sure wish no one had to be here...Sincerely,TracieNS Co-owner/moderator--- mjluvsgolf <mjluvsgolf (AT) yahoo (DOT) com> wrote:> Hi, I have looked for a msg. board for NS for a> while and finally gave > up until recently. I was diagnosed with NS 2 years> ago and was put on > prednisone (60 mg) and within 2 months doubled my>

weight (150 to 300 > lbs.). As my neurologist lowered the prednisone (too> fast) I suffered a > stroke. Two months later I broke my left leg. Six> months after than > developed seizures, had a brain biopsy. During all> this time, I did > start on chemo (cytoxan - 1800 ml every 3 weeks) and> have continued the > prednisone lowering the dose now to 20 mg. My last> MRI isn't showing > any improvement (although I feel better) or may even> be worse. I'm at > a loss. Has anyone else experienced these types of> effects. I just > feel so very isolated and alone in my situation, or> do you have a > suggestion as to where I can turn for help. My> neurologist hasn't > referred me to anyone except to a "specialist" at> s Hopkins but he > suggested a rheumatologist, she doesn't know any> that she trusts to > send me

to.> >

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Hi Tracie. I'm MJ Whaley from Clayton, NC. Thanks for responding and providing some really great info. I wasn't aware of much of what you told me. So thank you. I am so hungry for information & to hear from others who understand what this is like. I have a tremendous difficulty with coming to terms with body image & not being able to work. I have worked since I was 14 and this disease has robbed me of my functionality to perform a regular job. In response to your question about other affected areas 8 years ago I was diagnosed with sarcoid of the lymph system and in my abdomen. Following a lymph biopsy I was put on a prednisone taper and nothing more was said or done until I developed it in my brain. tracie feldhaus wrote: Good news, you're not alone any more! Sadly, yourstory is like many of ours. Cytoxan can help with the symptoms-- and that is good.Generally what we find is that it takes a combinationof meds to get the sarc beast to slow it'sprogression. As of yet, they still don't know whatcauses sarcoidosis, so we don't have a "cure."Rheumatologists are a good place to start as they dounderstand systemic inflammatory auto-immune diseases.They also have a lot more knowledge in the use of the"Biological" (BRM's) Response Modifier drugs. What they do know about sarc is that there seems to bea common link to agricultural dust, pesticides and agenetic predisposition to

auto-immune disease. Theythink that we probably came into contact with sometype of rogue virus that turned our immune system on,and now it won't shut down. So that is why we end upon immunosuppressants.There are many combinations that we are on. Personally I'm on Plaquenil, Methotrexate andRemicade. Others are on Imuran, Arava, Enbrel, Humiraand such. BRM's actually block the TNF-A(alpha) which we produceto much of. Our immune system sends out white cellsto fight infection or injury. Then it sends ourproteins in the form of TNFa and TNFb. One clears outthe white cells, then the next ( is supposed toclear out the a cells. We end up building one on topof the other-- and these form the granulomas. Thechallenge is that as these build up the change thestructure of our organs and muscles and ligaments sothat the organs can't work correctly.I'm sure you're aware that 80% of us end up with sarcin our

lungs- eyes and liver are the next highestpercentage of sarcoidians. Do you have sarc in any other place than in yourbrain? So many times we end up being dx with arthritis, whenit is the sarcoid-induced. So if you are havingbody/joint pain along with all the CNS stuff-- then aRheumi would definately be a very good choice. Youmay want to call the MD that you've been referred toand ask if he has experience with patients with sarc.Let us know how we can help-- and again-- welcome tothe family. We sure wish no one had to be here...Sincerely,TracieNS Co-owner/moderator--- mjluvsgolf <mjluvsgolf (AT) yahoo (DOT) com> wrote:> Hi, I have looked for a msg. board for NS for a> while and finally gave > up until recently. I was diagnosed with NS 2 years> ago and was put on > prednisone (60 mg) and within 2 months doubled my>

weight (150 to 300 > lbs.). As my neurologist lowered the prednisone (too> fast) I suffered a > stroke. Two months later I broke my left leg. Six> months after than > developed seizures, had a brain biopsy. During all> this time, I did > start on chemo (cytoxan - 1800 ml every 3 weeks) and> have continued the > prednisone lowering the dose now to 20 mg. My last> MRI isn't showing > any improvement (although I feel better) or may even> be worse. I'm at > a loss. Has anyone else experienced these types of> effects. I just > feel so very isolated and alone in my situation, or> do you have a > suggestion as to where I can turn for help. My> neurologist hasn't > referred me to anyone except to a "specialist" at> s Hopkins but he > suggested a rheumatologist, she doesn't know any> that she trusts to > send me

to.> >

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Welcome friend, You have come to the right place. I am very new to the group so don't have much info to give you as I am learning from the group too. But, I can tell you you have found a group of the kindest, most compassionate people on the planet. They have helped me a ton and I know they will help you! Please don't be shy. Ask any question, complain, cry, scream, whatever .... we all truely care and are here for you! We are all in this mess together. You are not alone! Hang in there! Cathymjluvsgolf wrote: Hi, I have looked for a msg. board for NS for a while and finally gave up until recently. I was diagnosed with NS 2 years ago and was put on prednisone (60 mg) and within 2 months doubled my weight (150 to 300 lbs.). As my neurologist lowered the prednisone (too fast) I suffered a stroke. Two months later I broke my left leg. Six months after than developed seizures, had a brain biopsy. During all this time, I did start on chemo (cytoxan - 1800 ml every 3 weeks) and have continued the prednisone lowering the dose now to 20 mg. My last MRI isn't showing any improvement (although I feel better) or may even be worse. I'm at a loss. Has anyone else experienced these types of effects. I just feel so very isolated and alone in my situation, or do you have a suggestion as to where I can turn for help. My neurologist hasn't referred me to anyone except to a "specialist"

at s Hopkins but he suggested a rheumatologist, she doesn't know any that she trusts to send me to.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Welcome friend, You have come to the right place. I am very new to the group so don't have much info to give you as I am learning from the group too. But, I can tell you you have found a group of the kindest, most compassionate people on the planet. They have helped me a ton and I know they will help you! Please don't be shy. Ask any question, complain, cry, scream, whatever .... we all truely care and are here for you! We are all in this mess together. You are not alone! Hang in there! Cathymjluvsgolf wrote: Hi, I have looked for a msg. board for NS for a while and finally gave up until recently. I was diagnosed with NS 2 years ago and was put on prednisone (60 mg) and within 2 months doubled my weight (150 to 300 lbs.). As my neurologist lowered the prednisone (too fast) I suffered a stroke. Two months later I broke my left leg. Six months after than developed seizures, had a brain biopsy. During all this time, I did start on chemo (cytoxan - 1800 ml every 3 weeks) and have continued the prednisone lowering the dose now to 20 mg. My last MRI isn't showing any improvement (although I feel better) or may even be worse. I'm at a loss. Has anyone else experienced these types of effects. I just feel so very isolated and alone in my situation, or do you have a suggestion as to where I can turn for help. My neurologist hasn't referred me to anyone except to a "specialist"

at s Hopkins but he suggested a rheumatologist, she doesn't know any that she trusts to send me to.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.