Abby, I'm sorry you aren't doing well. MG can be sort of confusing, to say the least.

When I go out and do errands, I am awful by the time I get home. Sometimes, I can barely move. You would think with rest that I would be better the next day. Wrong. The weakness from doing those errands may not "peak" until a couple days later. And then if I keep pushing things, I can continue to get worse.

I know that most people like things that are predictable. It makes life easier. I'd like to know that if I do A then B will happen. But with MG, it can be anywhere from B - Z!

For example, for the past three weeks, my neck/jaw/tongue muscles have been horrid. I socialized with family and those muscles got weaker. I don't usually do "nonstop" talking. Then I didn't rest those muscles enough, did more talking and it got to the point of my tongue cramping with the slightest talking, like a sentence. So I had to STOP TALKING. Like Jana and others, I can't do the drugs other than Mestinon unless absolutely necessary. I have to manage with balancing doing things with rest.

It's hard to get used to that balance. Give yourself some time. There just isn't some easy algorithm to MG. It's like having someone continually jump out from behind you and say "boo."

And I think one of the hardest things is thinking you will be able to be "normal" again. I honestly think very few people with MG get back there. If you can accept the new you, the new normal, things will go easier on you.


Annie