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DiscussionCLIPPERS: Looking to connect with others
Autoimmune Diseases | Last Active: Dec 7 10:15pm | Replies (323)Comment receiving replies
Replies to "@astanko wondering how you’re doing. Has anything changed/improved for you? Hope all is well."
Thanks so much for checking in with me! I am grateful and happy to report that I'm doing very well. I'm back to all of my normal activities. As for treatments, since my first message I've just been on Prednisone. I tapered down in prep for a Gallium PET scan but I felt like my eye jumpiness (nystagmus) and vestibular instability was starting to creep back. The scan is still not approved by insurance so my neurologist had me do a 3 day 1g Salu-Medrol pulse and that made the symptoms go away. When the scan gets approved (hopefully) I'll taper down again for that. The Gallium PET scan is to rule out neurosarcoidosis. I'm currently on 20mg of Prednisone daily. I have a teeny bit of nystagmus and I'm kind of slower in general than I was a few months ago (I seem to need to think and move a bit more slowly). This could be due to the brain injury of the initial inflammation. Aside from that I have a bit of vertigo (about 20 secs of spinning when I get up or lie down) and the other normal side effects of Prednisone, which are manageable so far (so hungry!). My doctor has said that once we get a confirmed diagnosis he wants to put me on Rituximab so I will check out the links you provided about that...as well as the medications you said you're on currently. Overall I'm just very grateful to be able to walk, workout with weights, drive, work and generally be alive. Every day is a gift.