New to Group - Looking for individuals that match our situation

[Guest guest]

Hello my husband was diagnosed with neurosarcoidosis in April of

2008. It has been a long and trying road and I'm just looking for

anyone who closely matches are situation. My husband began getting

numbness in his hands almost 5 years ago now. He went to all the

doctors for pinched nerves, carpel tunnel, and we ended up with an

orthopedic doctor thinking it was a disk in his neck. My husband had

had a few MRIs but the orthopedic doctor wanted him to have

a " closed " MRI. Well to our surprise after the first closed MRI they

immediately repeated the MRI with contrast. We were then told by our

orthopedic that he had a mass on his spinal cord and that he couldn't

help up.

We were referred to a neurologist at the Cleveland Clinic this was

September of 2007 and they of course ran several tests. In December

of 2007 the neurologist decided to try doing a biopsy of the mass.

He could not be sure if the mass was inside or outside of his spinal

cord. Well to our dismay the mass was entirely inside his spinal

cord and they doctor decided that the risk outweighed the possible

reward and opted not to go into the spinal cord. Recovery from that

surgery was difficult but we got through it.

Finally in April we were referred to another surgeon (my apologies I

do not remember his specialty) who performed a biopsy of some lymph

nodes that showed slightly irregular on a CT scan and that is when we

were finally handed our diagnosis of neurosarcoidosis.

My husband was put on Decadron and as of July 3rd he started Remicade

treatments. He is being treated right now by a pulmonary doctor but

who specializes in sarcoidosis.

So that is our history but I've read many postings here and other

places and most individuals seem much worse off than my husband. His

hands have gotten to the point where he has difficulty eating and

buttoning his pants and/or shirts is nearly impossible for him. I'm

really looking for anyone that might mirror our situation because

there is a part of me that wonders if he has been diagnosed correctly.

To make matters worse back in February after being on Percocet and

valium for pain and such after surgery the doctor took him off those

meds and my husband had a complete mental breakdown. The

psychiatrist that we saw believed it could have been withdrawal from

the medications but we have been dealing with his mental condition as

well as his sarcoidosis diagnosis.

I love my husband more than anything in this world and we are truly

in this together but I'm looking for support as well as help and

advice to help us through this situation.

[Guest guest]

Hi Jan,

Welcome to the family. Your husband is blessed to have you willing to work through this with him. Chronic disease taxes even the best of our relationships.

Many of my symptoms are similar to your husbands. The hand numbness that goes on for years-- the granulomas on the spine that press on those nerves (sarc loves our hands and feet) make the neuropathy difficult at best.

I know I've given up wearing blouses because of the button issues, and my shoes are slip ons-- no laces to tie.

It sounds like he has excellant MD's -- this disease usually takes years to diagnosis--- so hearing that he has gotten such a quick diagnosis is actually good news.

As far as treatment-- it sounds like he's on the right track. Decadron (a type of steroid similar to prednisone) along with the Remicade is a good combination.

I've been on the Remicade for a couple of years now, and it has been wonderful. I get my infusions every 28 days-- and so I have a good couple of weeks each month. I will admit that I seem to have hit a "plateau" in that it holds me over for about 23-26 days, then I really hit a wall when the lymph pain and swelling come back, and my mind starts playing games with my thinking and tolerance of noises and sounds, along with becoming really impatient with just about all the trivial stuff of life. (My family would tell you it's not the trivial....)

In our ARCHIVES and LINKS section (the address is at the bottom of this and every email from the group- so just scroll down) you'll find a huge number of articles and sites that answer alot of questions-- and they are available for you to print out and take to your MD's, share with family, etc-- so that you can all be on the same page.

Understanding what is going on is key to dealing with this disease. What your husband is going through is not a mental illness- although the depression and such is secondary to this illness, and when you add pain and sleeplessness that he's experiencing-- you end up with the seratonin and norephinephrine levels getting out of whack -- so yep, he's depressed-- and the way to handle that part is with anti-depressants, (it breaks up the disruption of the pain cycle and will help him sleep--which is necessary to restore and heal) so don't confuse it with the old concept of "mental illness." It is truly a part of NS.

I wish I could say he's been misdiagnosed--- even if he had MS-- he'd have more treatment options-- but I wouldn't wish any auto-immune disease on anyone- at least his MD's were willing to look quickly at what was happening and got him on treatment.

You'll find that after the next couple of infusions- he should have some relief of his symptoms. The spinal pain should be better, along with the numbness. I hope that the can get him off the decadron, and onto to Methotrexate and or Plaquenil-- it takes a combination of meds to get this controlled.

Know that there is no cure-- they still don't know what causes sarc-- so the best we get is to have some control, and sporadic remissions where the progression doesn't keep going on. a

You've found a wonderful group of people on the same path- I personally have been dealing with my sarc for the last 16 years-- so it's not that his life is in danger-- but his lifestyle will have to adapt-- and pacing yourself and getting rest when the body says it needs rest is really key to doing as well as possible.

Don't hesitate to ask questions, if we don't knwo the answer, we'll help you find them. Or at least explain what is going on in laymens terms-- and know that you and your husband are not alone.

We do have a chat room that is available 24/7-- and generally have a hosted chat on Sundays-- (as well as a faith chatroom for spiritual support) so again, scroll down and you'll see the LINK. Let us know via an email to the group that you're in the chatroom, and if we're available, you may be joined by someone else.

The owners and moderators all have sarcoidosis-- so we too are challenged by this- so if it takes a day ofr so before we anser your emails-- know that we will get to you!

AGain, welcome, and my heart goes out to you-- we sure wouldn't wish that anyone of our 500+ members have to deal with this.

Sincerely,

Tracie

NS Co-owner/moderator

New to Group - Looking for individuals that match our situation

Hello my husband was diagnosed with neurosarcoidosis in April of 2008. It has been a long and trying road and I'm just looking for anyone who closely matches are situation. My husband began getting numbness in his hands almost 5 years ago now. He went to all the doctors for pinched nerves, carpel tunnel, and we ended up with an orthopedic doctor thinking it was a disk in his neck. My husband had had a few MRIs but the orthopedic doctor wanted him to have a "closed" MRI. Well to our surprise after the first closed MRI they immediately repeated the MRI with contrast. We were then told by our orthopedic that he had a mass on his spinal cord and that he couldn't help up. We were referred to a neurologist at the Cleveland Clinic this was September of 2007 and they of course ran several tests. In December of 2007 the neurologist decided to try doing a biopsy of the mass. He could not be sure if the

mass was inside or outside of his spinal cord. Well to our dismay the mass was entirely inside his spinal cord and they doctor decided that the risk outweighed the possible reward and opted not to go into the spinal cord. Recovery from that surgery was difficult but we got through it.Finally in April we were referred to another surgeon (my apologies I do not remember his specialty) who performed a biopsy of some lymph nodes that showed slightly irregular on a CT scan and that is when we were finally handed our diagnosis of neurosarcoidosis.My husband was put on Decadron and as of July 3rd he started Remicade treatments. He is being treated right now by a pulmonary doctor but who specializes in sarcoidosis.So that is our history but I've read many postings here and other places and most individuals seem much worse off than my husband. His hands have gotten to the point where he has

difficulty eating and buttoning his pants and/or shirts is nearly impossible for him. I'm really looking for anyone that might mirror our situation because there is a part of me that wonders if he has been diagnosed correctly.To make matters worse back in February after being on Percocet and valium for pain and such after surgery the doctor took him off those meds and my husband had a complete mental breakdown. The psychiatrist that we saw believed it could have been withdrawal from the medications but we have been dealing with his mental condition as well as his sarcoidosis diagnosis. I love my husband more than anything in this world and we are truly in this together but I'm looking for support as well as help and advice to help us through this situation.