The NIH is compiling a database of MS patients, who they can dip into for further research at some later time. Becoming part of this database requires them to do a complete neurologic workup on a patient, which includes a 3 Tesla MRI, spinal fluid exam, and extensive blood work. The trial notice stated that they were looking for people with "possible MS", and that their research doctors would determine a diagnosis for each patient. Here's a link to the trial description:
I immediately called, and at first they were very discouraging because I live so far away from their headquarters (Bethesda, Maryland). After I started describing some of the "atypical" aspects of my case, though, they became interested, and asked me to send them my records.
They called me last Monday and told me they wanted me to be part of the study! I'm scheduled to go down to Maryland to be seen by them on June 17 and 18th. I'm in supposed to go back two more times, at one-month intervals, for follow-up MRIs and some additional testing (lumbar puncture, etc.)
I'm very hopeful that these people will finally be able to figure out just what the hell is going on with me. Johns Hopkins has told me that although what I have might be PPMS, it would be a very strange case, and it's in fact very uncertain that what I have is MS. My primary neurologist has said that if I were a new case, he would suspect neurosarcoidosis, but since I've tested negative for that, and negative for most of the other differentials, he thinks it's most likely PPMS. I'm pretty sure that I don't have MS, but something more systemic.
I'm thinking if any one can figure out the puzzle of my medical predicament, it will be the scientists at the NIH, many of whom specialize in rarer neurologic disorders. And their help can't come a minute too soon, because the MS (or whatever it is) is really kicking my ass...
9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
A question - how did you get tested for neurosarcoidosis?
My neuro said that he'd have to biopsy my brain! - obviously not a pleasant thought and he said he'd only do it if I was dead. It's just that my history is one of glandular fever (mono) that infected my liver and caused hepatitis, and 6 weeks later I got sarcoid lesions on my leg bones. There is a strong family history of sarcoidosis too. 7 years on I was diagnosed with MS but my neuro said he wouldn't think it's neurosarcoidosis - I've always wondered though.
RR-MS dx 1998 and Coeliac dx 2003
Tecfidera, Cymbalta, Baclofen.
EPO, Fish Oils, Vitamin D3 2000 IU, Magnesium, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle, Melatonin.
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