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Has anyone been diagnosed with GFAP
Autoimmune Diseases | Last Active: Apr 15 7:49pm | Replies (54)Comment receiving replies
My father was diagnosed after having such similar symptoms to everything described. He was completely non-ambulatory by the time he was inpatient at Emory in Atlanta and they finally did a spinal tap and came back as positive for GFAP. He responded so well to IV steroids in the hospital in late december but they did no taper and we didn't have the diagnosis so it came raring back in January. We finally just saw a neurologist in late February and he is now on a Prednisone taper and immune suppression medication. I"m interested in the supplements as well if anyone has any suggestions. Our Neurologist is probably the best in the state however still has no experience with this disease because it's so rare!
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This is very interesting.
My husband was hospitalized in October with rapid onset of confusion, extreme difficulty with gait and balance. He was experiencing hallucinations and psychosis. One CSF test for GFAP came back abnormal, but subsequent tests came back negative. He also was given 5 days of high dose steroids and responded very quickly. He was released without any taper also, and by the end of November he had relapsed. His neurologist feels he has GFAP, and he is now on oral steroids and mycophenolate.
The doctor recommended taking 600mg calcium with D3, due to the steroids depleting calcium. He also prescribed Fosamax.
My husband has been having outpatient physical therapy and cognitive therapy 3X a week and I feel it has helped him a lot.
He is doing much better, and can even drive again as of last week. He still has gait and balance issues, and problems with short term memory.
I hope your father improves. I think because he responded quickly to steroids he will get better.
My best wishes to you and your father.