Just some quick back story. I'm coming up on a year since coming down with the Miller Fisher Syndrome (MFS) variant of GBS. If you look up MFS online everywhere it seems to describe the progression as more mild than GBS, even though as far as I can tell the only real difference is whether the symptoms are ascending or descending. But my case was milder than most GBS cases, but has all the classic symptoms of Miller-Fisher. Anyway, for the past 6 months I have had very little improvements if any at all. I had a good solid steady rate of improvement for the first 5 and am grateful for everything I've got back. At first I thought it was maybe a "lull" and hoped that I would continue to improve but now it's gone on so long that I've beginning to think I need to manage my expectations a little bit better to avoid getting too discouraged. Did anyone have a really long period of no improvement and then have some improvements? Or is this the "new normal"? Just trying to gain some perspective here. Thanks!
Hi Nostromo, I am just beyond a year out. My neurologist told me that somewhere between 6 and 12 months after the first symptoms, I would know how much I will get back. I (fortunately) made huge strides very quickly to a point, then slowed to a more steady rate of recovery. In hind-sight, I realized I hit a plateau about 9 1/2 months. I really haven’t improved much since then. At this point my recovery is more about learning to manage the changes in my hysical abilities and ensuring adequate rest. Best wishes to you!
Thanks for the reply! My neuro-ophthalmologist told me the same thing as your neurologist. My regular neurologist just said nerves are funny things and regenerate slowly, no time table or anything. I'm just trying to settle in on a sweet spot between too much hope and too much cynicism.