Reply To: I don't know what to do.

September 4, 2015 at 8:57 pm

Thanks for the links. The first one — the Miller Fisher variant one — this is exactly what happened to me. Cranial nerve involvement, bulbar weakness that progressed to my left arm and hand. Then later, during a second bout with severe stomach problems the entire thing descended. I could actually feel my nerves getting attacked until my knees were wobbly and suddenly I had to sort of massage the ground with my toes to stay stable. There were issues on both sides but the left was the worst.

How could I have missed this? I’ve been in bed for seven months just waiting for *something*. The whole time I kept reading about all this I kept thinking well, it can’t be GBS or anything like that because I have descending weakness, not ascending weakness. I think I just skipped over the “Miller Fisher variant” part. GBS meant total paralysis and I didn’t have that. I searched, I vetted, I shook my head. Nah.

What the hell, I’m not a neurologist, that’s why I spent my life savings going to see these people. I would have been MUCH better off just buying prednisone and treating myself, that is if in fact I even have a neuromuscular disease that’s treatable, NOT THAT ANYONE HAS TRIED TO FIGURE THAT OUT THIS YEAR.

I’ve been going to see a neurologist at Northshore University Health System. I’m so angry right now because I kept telling this story — about the facial weakness and the “viral prodrome”, diarrhea, descending weakness –all the things that happened — and the first thing she sent me to do was go visit an endocrinologist who not only made me wait six weeks to see her but then sent me for blood tests for a pheochromocytoma, which had to be sent off to Mayo, which took another week, and then when I made another appointment I got sent away again *because the endo had not contacted me in person yet.* I kept telling the story because I thought it might be important, because for example the *neurologist* whose photo is published on the Neuro clinic’s website is ten inches across from a hyperlink that says WE TREAT CIDP!

Goddammit I am so upset.