[Stellatum]

First, I really got a kick out of seeing the plaque on his door. Right under his name it said "myasthenia gravis." Yay, a specialist!

Here's what he told me:

1) My SFEMG two years ago (by which I was diagnosed) was very strongly positive.

2) Hypokalemic Periodic Paralysis would not cause a positive SFEMG.

3) It's "common" for Mestinon not to help MG patients.

4) My spells of intense weakness are unusual for MG, but not weird enough for him to question my diagnosis because of them, especially since we've ruled out so many other things.

5) If Mestinon doesn't work, other acetylcholinesterase inhibitors won't, either, because they're very similar. (That said, I'm going to cautiously experiment with huperzine anyway--but remember, don't take huperzine if you're already taking Mestinon! They both inhibit the same enzyme!)

6) I should give the new higher dose of Imuran (I upped it to 250mg in October) another three months to kick in, and then consider either
Cyclosporin instead, or low-dose (10 or 20mg) Prednisone besides.

7) It's my hip muscles that are weakest. I could push back on his hand quite well in every test except the one where he had me sit on a chair and lift my knee up while he pushed down on it.

8) I don't present like someone who has a CMS, especially since I'm 46. Also, CMS's often give people a certain facial structure that I don't have.

9) He really thinks I have MG. It's true that a SFEMG isn't specific to MG, but the other diseases that yield positive results are nerve diseases that would have symptoms I don't have (I didn't ask what the diseases or symptoms are. I'm guessing it's stuff like numbness, pain, and tingling--just my guess).

That's all I can think of for now. My plan, subject to change, is to give the Imuran until June to kick in. The reason I'm waiting five months instead of three is that I got a huge boost in May last year. I want to see if it happens again, which might have something to do with getting more sun (yes, I'm taking vitamin D supplements). If not, I will consider the low-dose Prednisone.

Here's my thinking on the Prednisone (grateful acknowledgement to 4-Eyes for her part in this). There are two things about it that scare me: the immediate side effects (like weight gain, anxiety, and insomnia) and the long-term side effects (like diabetes, osteoporosis, and cataracts). The neuro suggested I try a low dose, and that might be enough, in conjunction with the Imuran. If I try it for a week and can't tolerate the immediate side-effects, I can quit. If I can tolerate them, I can hope to take it for a while (say, nine months) and then wean off it. It's something to consider.

Thanks to all who are following my continuing saga!

Abby