So, I saw the mg specialist today, finally. He says he doesn't think I have myasthenia gravis, because my main symptom (I have the others, but they're mild) is trunk muscle weakness. However, he can't think of any other diagnosis that is more likely than mg.

So, we're doing this:
1) retest my AChR antibodies, because he knows those fluctuate (yay!!!)
2) If those are still negative, repeat the SFEMG, this time on muscles closer to the trunk (the one on my forearm was "borderline")
3) test me for Lambert-Eaton Syndrome (nope, not a smoker...)

I am very happy with this game-plan. When he suggested #1, above, he won my confidence. Also, I was the one who suggested Lambert-Eaton, because I know it tends to affect the proximal muscles especially. He said, over the course of the next 15 minutes, "No, it really doesn't look like LEMS...well, I suppose it could be LEMS...you know, LEMS is a possibility...we should definitely test you for LEMS...etc. So, I found that hopeful, too.

Well, emotionally this is a bit of a blow (my first neuro was quite sure it was mg--just sending me for a second opinion before starting immunosuppressants, as he should). On the other hand, I am doing quite well, because I'm learning to manage the disease. I know what I can handle and what I can't. I know when to use the canes and when to use the rollator. And I'm still grateful that I can see and chew and swallow, and that I have no pain. My life is different, but I know that compared to a lot of people, I have it good.

So, thanks for reading. I know a lot of you have been through, or are going through, the same long road to diagnosis. I wish you all peace and speedy answers.

Abby