Thank you everyone for your kindness. Thanks you Annie, I hope your flooding is receding. I have been on Bipap for 6 months. I read a post with attached article on the internet about using BIPAP during MG crisis to prevent the vent. So when I heard them in the ER talk about venting, I begged for the BiPAP and they did it and shot me full of steroids. That was able to manage the crisis for me. I had the whole sleep study done 6 months ago. O2 levels were low 80's at night and had numerous episode of stopping breathing with no snoring.

Neuro, pulmonologist and primary care dr all came day 1 to hospital. I made sure I had Drs that were associated with a Hospital ER that new had to handle MG. I had my paperwork copies of all my meds, doctor and history, so they called everyone. They gave me solu-medrol IV while in the hospital. Around 360 day1, 240 day2, and 120 day3. I asked to go home after they said no plasmapharesis. i was still very weak, but I can do the steroid thing myself at home. I have air conditioning and all the fans on at home and breath comfortably at rest. Any activity (walking to the bathroom) gets me huffiing and puffing a bit so I am taking it very easy.

I have had an exaccerbation since Feb - I drop everything, My right side of my face droops (almost stoke like) all the time even after mestinon and the fatigue is overwhelming. i have been bathing in a chair for 2 years and have all the grab bar things. The visiting nurse and occupational therapy is coming to the house. The walker, hospital bed, etc gets delivered on Monday. I'll spend my day in the recliner until tomorrow.

I am relived it is over and feel as well a I do as long as I do not do anything. I am on a prednisone taper schedule and see my neuro in 7 days and Primary dr in 10 days. I am out on disability until further notice. I am glad, I just can't manage the heat with the progress of my MG.

The good news is I have an appointment in 4 weeks with DR Drachman at John Hopkins. I think I will ask to stay on disability until I see him. My neuro is good but very conservative and I need more aggressivve treatment. I am not willing to settle for this quality of life until they try more things: thymectory, other immunosuppressants, ritux etc..

Take care everyone and try to stay dry Annie.
kathie