So sorry to hear that you are going through all of this. . . very scary, especially when things start in on the breathing front. I have had to he hospitalized twice in the last two months for the same reason. The prednisone at 40mg every day with the mestinon just wasn't working for either.

I am concerned that perhaps your pulmonary doctor maybe not understanding the issue with the diaphragm weakness in MG?? I mean you really sound like you are struggling and when I got to that point the ER was where I needed to be. They did the respiratory tests like vital capacity and MIP and MEP every 4 hours and put me on oxygen to make sure I wasn't getting any worse and then they did start IVIG for 5 days and I was off of oxygen within 12 hours. It changed my life!!

Also, sleep apnea is a huge issue in MG and maybe that is an issue if you are waking up like that?? They could check that too.

I really would go to the ER if I were you . . .I hope you get some relief soon.

Please let us know, debra

Hi--I always hesitate to give any sort of medical advice because I'm new at this myself, but then all the burden falls on our resident "experts," so here I go anyway. Have you had a CT-scan of your thymus gland??? All patients with suspected MG should have one anyway. I seem to remember someone posting here who said her first symptom was a cough that just wouldn't go away, and it was related to her thymus.

I'm sorry you're so sick, with such scary symptoms. I hope you can find answers and treatment soon.

Abby