I have a question. I still don't have a diagnosis after all this time, although I have something that seems very similar to MG. I respond to Mestinon, which I take every 3 hours during the day. I receive IVIG infusions every two weeks. I don't know why, but even with these treatments, I have been gradually doing worse over the past month or so. This week especially has been bad, and I've spent most of the days using the non-invasive ventilator, in bed. It's been very hard to breathe and walk. Tomorrow I have IVIG treatment, and I hope it will help.

Is there anybody else here who receives IVIG treatment? Do they still have periodic exacerbations? I wish sometimes that I could take some other medication to help keep things on a more even keel (maybe something like Cellcept?), but without a formal diagnosis, my doctor won't consider it. I am thankful to be getting the treatment I do receive, but periodically it seems like things go off-kilter like this, even with everything we are doing. I wish I knew how to fix it.

Thanks,
Erin