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CLIPPERS: Looking to connect with others
Autoimmune Diseases | Last Active: 2 days ago | Replies (308)Comment receiving replies
Hello @jamie72 Welcome to Mayo Clinic Connect! We’re glad you found the site. The folks in this discussion group are great and will happily answer all you questions (if we know the answers!).
Can you tell me who diagnosed you with clippers? And, have you had all the diagnostic tests: MRI, and maybe a brain biopsy? I do have to say, that clippers is not an easy disease for most. Some patients with little brain involvement, can get to a very positive point in the disease. As for me, I’m in year 6-7 and still have to work hard and pay attention to what I’m doing. I’m on CellCept and 4 mg prednisone (I’m trying to taper off, but it’s not easy.) I just started Rituxan which really made a difference! And, I get my 2nd dose this week! What do you hope will happen with treatment?
Replies to "Hello @jamie72 Welcome to Mayo Clinic Connect! We’re glad you found the site. The folks in..."
Sorry didn’t read the last sentence. I just want to get back to driving and being able to work. Right now my body feels like it’s about to fall asleep and like my nerves are having a party at the same time. I’m afraid to drive with my arms feeling like this and I feel like my reflexes are off some.
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I had an MRI on July 7. My primary doctor, the hospital in house neurologist, and an out patient neurologist made the first diagnosis. I have been to UVA and the neurologist there is 99% sure it is clippers. But is doing another MRI to confirm and make sure something else is going on. She said that if is was just clippers that the brain lesions should be clearing up with the prednisone.