So I had a BMT last spring and although I did have some minor and major hiccups in the process I ended up alive and was well on my way to recovery. Well, seven months down the road I was having some issues with falling. I would keep falling over or lean up against the wall in order to walk in my apartment and I fell numerous times to standing in the bathroom.
I was not feeling well at the time so I had assumed it was maybe my equilibrium being off-balance. It ended up getting so bad I would fall on the floor and not be able to get myself back up or even pull myself up onto the couch. By the end of that week I was losing complete control of my legs and arms my father brought me to the hospital to get look at and by the next day after we got to the hospital I was completely paralyzed. I was not able to move any part of my body I could barely move my eyes and I had lost all reflexes
No doctor knew what was going on with me, I then became the guinea pig of the hospital. Okay longer story short I was diagnosed with Miller Fisher syndrome Variant with Gullian beret. Now out of every possible thing the hospital told me that could go bad, which was in lot of information, I was never once mentioned anything about this. When I asked my bone marrow transplant doctor that he had stated it's very rare and he has never seen a case of his own with one of his patients. So after numerous numerous tests in different department seeing me we started to figure out a little bit of information. It really sucks having Something that no one can tell you anything about. When I googled the syndrome it doesn't even bring up much because it's so rare they have no information on yet.
Enough blabbering my Question is has anybody else had this happen to them and if so how long did it last for? November will be my one year mark of having this and he said it can take anywhere from Months to even years and there is a bout 5050% chance I'll be back to almost normal. I have major neuropathy and pain in my hands and arms and in my neck and my spine as well as numbness in hands anddd feet. but if anybody else has this syndrome or has had it you could please talk to me so I don't feel like the only fish in the see I would really appreciate it thank your