I'm nervous about switching, because I'm worried there will be a gap, and I'm worried that a new neuro might not be willing to give me the Mestinon, since I'm seronegative (waiting on MuSK results) and borderline-SFEMG. Here's why I'm unhappy with my present neuro:

1) He told me that MG means my immune system is attacking my thymus. Maybe he misspoke--maybe it just came out wrong. But for goodness' sake!

2) He suggested I try the Mestinon every three hours and didn't warn me that too much would make me weak. Lucky I knew that, or I would have assumed I was suddenly getting worse and needed to keep up the 3-hour dosing--I could have brought on a crisis!

3) He sent me for a CT-scan of my thymus and insisted on contrast, though the radiologist said it wouldn't help. I never did have that CT-scan--no one was sure whether Graves' patients can have idodine. Later I read on the MGFA website that iodinized contrast dyes are to be avoided by MG patients!

4) His secretaries have lied to me repeatedly ("yes, all your tests are in. Oh, the acetylcholine receptor antibodies test? Let me check...nope, those aren't in"). I got that three times.

5) His secretary made four mistakes on my CT-scan order. First she ordered it of my head. Then she faxed it to the wrong place. Then she ordered it without contrast, which made the neuro insist I repeat it with contrast. Then she ordered it without contrast _again_.

I would put up with that sort of incompetence for a really good neuro, but not for this one.

Sorry for going on and on...there are no MG specialists in my area (RI). I found two who specialize in "neuromuscular disorders," though, and I'm thinking of calling to ask if they have experience with MG.

Does that sound right to you guys? I just can't tell whether this disease is so rare that it's unrealistic to find a doctor who knows much about it--or whether I've run into a clear case of inadequate treatment.

Thanks again for all your support. The courage and kindness of the people here always cheers me.

Abby