Well, this is really hard to hear. . .that you are all not getting the help that you truly need and deserve. If you have to, get a new doctor please or go to the ER.

Kate, when my breathing became a conscious effort, that is when it started getting harder to get the breath in. I couldn't take a deep breath for a half an hour then it would get a bit better, then it felt like a block in my stomach would start moving up and the breath wouldn't go below that point. It got progresssively harder and harder to get a full breath in til we were scrambling for the ER and then I was in pulmonary ICU for 2 days, the hospital for 9.

Prednisone and mestinon, but especially pred, got me stable again with breathing. I am concerned about what you are saying. Please don't let this progress. . . call or see someone soon. debra