Thanks. That helps to know. Meanwhile, I've been experimenting with the Mestinon (with my doctor's OK), and I'm starting to think it does help. Not (like Annie says) on really weak muscles, but on mild weakness. My problem may have been that I was taking way too much. Not only have I gone down to half a pill (30 mg.), but I'm taking it further apart. Before, I think what was happening was that by the late afternoon, which is typically a bad time of day for me anyway, the doses I'd been taking every three to four hours were sort of piled up, and that was making the weakness worse. Now I take my first dose at noon, and my second at 5:00. I really do feel better, only there are so many ups and downs to this disease that it's hard to be too confident that I know why I'm feeling better.

I hope you can get your neuro to get more aggressive. I am going to tell mine this: I spend all day doing nothing so that I don't get myself into a state where I can't do anything. Then, periodically, the absurdity of that hits me, and I overdo it, and then I'm on the floor. If this is the best we can do, I will learn to live like this. But if there's something more we can be doing, something that makes sense in terms of a risk-benefit analysis, let's do it!

Abby