NEUROSARCOIDOSIS

[CGTMHI]

I was diagnosed in 1994 with spinal cord sarcoidosis, and within six months was paraplegic from T-4. I do not have it anywhere else that has troubled me. I did have a pimple removed from my forehead  earlier this year which proved to have granulomatous cells. I am trying to find another person in the world with my problem, but have had no luck whatsoever. Can you help? I am a 63 year old caucasion lady who had never had a day's illness before.

Many thanks,
Ruth

[CCF Neuro[P] MD, RPS]

Dear Ruth:

I am sorry to hear about your disease.  Actually, I have never seen a patient with isolated neuroscardosis.  Usually we try and differentiate it from MS (which I have seen many patients with isolated spinal cord findings), so I am suprised at your posting.  Usually we see neuroscardosis affecting the facial nerve and other cranial nerves.  The CSF usually has an elevated ACE level and maybe high glucose.  

I hope that your able to find someone to correspond with who suffers from the same problem, I do know there are many with neuroscardosis.  

Sincerely,

CCF Neuro MD

[Judy - Follow-up question]

Post on the Mass General Neurological boards. It is quite active. You might have some luck.

Best wishes.

[lori(a Question)]

a question for the neuro re: ACE CSF test, would a bloodtest for ACE that is neg rule out sarcoidosis?

[Lon Jon Luke]

In 1992 I was found passed out on a sidewalk in Tacoma and, after spending some time in a local hospital, was identified (my wallet was gone). I ended up in a hospital in Alaska where I came from. I was having 2 grand mal seizures a day and it took 3 months and a brain biopsy to identify an inflamation (inflammation) of my meninges (the skin covering my brain). They called it neurosarcoidosis and put me on tegretol and methotrexate. Now I have my balance back, I can walk, I can remember, I can enjoy life again, but every once in a while I have another seizure. There is no talk of actually curing me though I have 3 doctors working on it.
  Up until now I have been working towards answering the very big questions. The kind that take a lifetime of study just to understand the question. Such as: what is the nature of gravity? But now things could change so fast for me that I may not get a chance to approach the question.

[Lon Jon Luke]

In 1992 I was found passed out on a sidewalk in Tacoma and, after spending some time in a local hospital, was identified (my wallet was gone). I ended up in a hospital in Alaska where I came from. I was having 2 grand mal seizures a day and it took 3 months and a brain biopsy to identify an inflamation (inflammation) of my meninges (the skin covering my brain). They called it neurosarcoidosis and put me on tegretol and methotrexate. Now I have my balance back, I can walk, I can remember, I can enjoy life again, but every once in a while I have another seizure. There is no talk of actually curing me though I have 3 doctors working on it.
  Up until now I have been working towards answering the very big questions. The kind that take a lifetime of study just to understand the question. Such as: what is the nature of gravity? But now things could change so fast for me that I may not get a chance to approach the question.

[Sandee]

Dear Ruth:

A new book  has just been published by a model named Karen Duffy who was diagnosed with spinal cord sarcoidosis in 1995.  The book is called "Model Patient" by Karen Duffy.  I bought it at Walden Books but probably any major bookstore chain should carry it.

She is the most prominent person I've come across with sarcoid and her symptoms were only of the spine in the beginning.  She treats in New York and gives her physician's name.  Perhaps this will be helpful to you.

I've also heard one of the most knowledgeable physicians in the country for neurosarcoid is Dr. Barney Stern at Emory University in Atlanta.

Best of luck to you.  Don't give up!  Someone out there can help!

[nightingail26]

A related discussion, what is neurosarcoidosis was started.