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Neurology (Expert Forum)
NEUROSARCOIDOSIS
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
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NEUROSARCOIDOSIS
by CGTMHI, Aug 29, 2000 12:00AM
, Aug 29, 2000 12:00AM
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
Many thanks,
Ruth
Doctor's Answer
by CCF Neuro[P] MD, RPS, Aug 30, 2000 12:00AM
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
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
Best wishes.
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.
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.
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!