I've given up on the Mestinon again. I really don't think it does anything for me, and I finally figured out that the aching and pulling in my left eye is a side-effect of the Mestinon, and not a symptom of the disease.

When I went for my stimulated SFEMG, I went off the Mestinon for two weeks in advance (after two inconclusive SFEMGs, I was taking no chances!). So when I was describing the pulling in my eye, the neuro said, "Even when you're off the Mestinon?" And I thought, "Hey, actually he's right--I haven't had any trouble with that these past two weeks."

I had thought that the pulling feeling in my eye came on when I was weakest, in the late afternoon and evening, but now I think that was a coincidence. That's the time of day the Mestinon is piled up (I was taking it at 9, 12, 3 and 6).

I think that before I was diagnosed, I really wanted to believe that the Mestinon was helping me, since that would be more evidence that I had MG.

Of course I may change my mind about this. Meanwhile, I am a very weird MG patient: seronegative and atypical symptoms, and not helped by Mestinon. One thing that helped the diagnosis is that I have Graves' disease, and in fact my MG symptoms first became noticeable a few months after I had a Graves' relapse. My neuro says the disease would have definitely started gradually, and taken some time to produce dramatic symptoms--which means it probably started at the same time as the Graves' relapse. That helps me to be confident that immunosuppressant drugs (I'm going to start Imuran soon) are the right treatment, even if I have some new kind of antibody that they haven't identified yet.

Abby