This isn't a weight related thing unless you count all the pounds I gained after 8 going on 9 months of prednisone. A month ago my neurologist decided to try & decrease the prednisone a bit to figure out if my feeling this weak & off balance was due due to the steroid or to the Susac's. It's due to the Susac's. So not only has the steroid been increased - it's gone past the original dose by 10 mg. In the meantime, I use my walker non-stop, as I have fallen 3 times now; I have osteoporsis due to the prednisone, my hearing is getting worse (but have been reassured that can be corrected by cochlear implants once all is said & done), & the decline in cognitive & memory issues is maddening. And it is just coming out that Susac Syndrome isn't as self limited as had been touted. Mayo Clinic is 2 weeks off - I'm told that there will likely be a brain biopsy scheduled (not necessarily the 1st visit), cytoxan therapy will be added to the steroids, along with a series of gamagobulin infusions. Two weeks away. .......... I'm frustrated, tired, can no longer hear very well over the phone with-o some major assistive technology including a light ringer because sometimes I miss the phone ringing. There are days when my hearing seems to just "turn on" & then I feel I'm in sensory overload - it's all too loud. There are days when I'm in top form & can accomplish a great deal & do. I spend the next 2 days out of it. Thanks for letting me vent . . . I apologize for the limited level of support. I no longer trust what I'm saying beyond a certain level. This is all so frightening.