Debra,

I'm so sorry you're in the midst of all of this. It all feels like a catch-22, doesn't it? My symptoms are much milder than yours are, but otherwise I'm in the same situatiion: seronegative, and can't get treatment until they diagnose me for sure.

I just wanted to mention that my neurologist told me that he's seen cases where the antibodies test negative at one time, and then positive later on. He said he had a patient recently whose first test was negative, and whose second test (not too much later) was very strongly positive. So it's not just some sort of borderline thing, either.

I'm being tested a second time for the AChR antibodies. After that, if need be, I'll be tested for the LEMS antibodies (and I'm getting a special EMG test for LEMS). I was tested once for the MuSK antibodies, too--don't know if they'll repeat that one.

I have to go off the Mestinon for my next SFEMG soon...not looking forward to that! This appointment is exactly the kind of stress that really wipes me out normally, and I have to do it off the Mestinon. I've asked my husband to take time off work (he's a teacher, so that's not easy) to take me.

I hope you get some answers soon! I'm so sorry you're having to put up with all of this turmoil when you're so sick as it is. I hope your doctors will see fit to retest your antibodies, too.

Abby