[erinhermes]

Hey there! I bet you are gonna have a book written about you some day ! Not what you want right now, but they have got to figure it out sooner or later.......they've just got to!

I don't know how you've hung in there this long - you are one tough cookie! I so admire your strength - wish I could be more like that!

I so wish we all lived closer to each other - that way we could run errands for each other, etc when we are having bad days........

Do you think your mom would even entertain the notion of seeing another neuro? That way she can get some REAL meds and feel better!

Can't wait to hear from you!
Big, big hugs!
Erin

Originally Posted by rumpled

I am sero-negative and my EMG's are negative with only a positive SFEMG - and while my mom's eyes are wild, mine are pretty fine. The EMG's do me in.

I told my mom that half a pill was not even a full dose but she listens to he doctors who must have their head in a place where they see with one eye out a belly button and not to me. They are not even doing any more testing and she is not pushing. Joy.

Yeah, the choking drives me nuts as it hits me even when I am not eating - so I choke on my saliva like when I am watching a movie or just sitting around and it can get hard to breathe at times. I try to limit my activity but it is a double edged sword - I do something and then end up in bed, or I just stay in bed as I know if I do something, I will end up there anyway. What a life. Or is it?

If you think getting a diagnosis for MG is hard, my endocrine stuff is also a nightmare. I have peripheral sight loss, an ACTH that is 3117 (6-48) and the docs say, well, the MRI is ok (presumed) - and the MRIs are the least reliable piece and often up to 40% inaccurate. Great. Whatever.

I have been reading. I just do not post much.

I am glad to hear you are going to be able to reduce your pred!