As far as meds, I am down to 20mg prednisone and dropping by 5 every 2 weeks, trying to get off it entirely for the thymectomy and then IVIG every 21 days. IVIG was 5 days long and now it is going to be for 3 days and reassess. I am doing that well as far as MG symptoms go. Strength is great and stamina is the best it's been in 7 months or more.

They have recently done a panel on me due to one random dark urine with IVIG that never repeated but everything was totally normal. My O2 saturation has always been very good: at 99 or 100% when they check it.

I am off mestinon because it does not "cure" MG--it manages symptoms and the doc says he has to be able to assess my true strength for surgery. I can use it if I need it but I actually have not needed it with all the IVIG making me very strong.

There is very little sodium in my diet except for when I go out to eat so that is something to watch.

When I was in crisis the 1st time in May, I did have PVC's in the hospital but they said it was due to my potassium being low as I was on a diuretic for hearing loss that was discontinued. Also, my rate would go up in the 130's during eating and moving around. I was very bad off. In June, they said everything looked normal during the hospital stay and they started IVIG and my heart was not as high or wild so I get what you mean about things being better when you are feeling better with our MG but this isn't resolving and my MG issues are totally managed at the present time. . .

That is interesting about the revealed medical issue. IVIG is saving my life but I am certainly having increased heart issues with it and that cannot be denied. Cutting back to the 3 days should help though since it all started after the 4th bag last time.

I read something that since the heart is not a voluntary muscle, it cannot be affected in MG. Does that make sense at all to you? You said when MG is worse, bp and pulse can be a problem. . .

debra