Thanks so much for the replies. It helps to know that just because I haven't bounced back yet, it doesn't mean I never will. I need more patience. I do plan on talking to my doctor again this week - he's great.

The Mestinon helps me significantly. I take it 60mg every 2 to 3 hours. I don't have to look at a clock to know when to take it. It starts wearing off after the second hour. I think it is what is keeping me out of the hospital. The IVIG has always helped me tremendously, but not as much when I get this far down. I had a round of 5 days at the first of April and may need to do that again, instead of the once every two weeks routine.

I didn't know with long-term disability that you could be on that for a while and then build back up to working. That is encouraging. I have a wonderful boss, too. He is very supportive. I don't really have to work for financial reasons although it helps, but being in a children's museum all day sure helps me keep a positive outlook.