Saw Dr Weiss today
 

Yes, he had a cancellation and got me in earlier. I have done better in some ways but the disease seems to be getting worse. Have started strangling, and arms are weaker. I can walk without falling now but stagger terribly when I'm flaring. Dr Weiss was very professional, and said he could see where my previous treatment was "messed up." Based on my clinical manifestations over the last two years he felt I clearly have mg. The Drs in my home town had tapered me from 60 mg to 10 mg of predinosone. I will say that I felt better at 30 mg than I have felt in a long time. Dr Weiss has me raising The prednisone to 30 mg for a a month and keeping Mestinon the same. He wants to go slowly and methodically . Thank you for all of your concern. I think I am from the "show me" state because I tend to want to slide back into denial... Dr Weiss said with my test results thus far and my symptoms that it couldn't be anything but MG. So there is the rest of the story

Duh.

And the doctors who did that fast taper could have killed you (via an adrenal crisis and MG crisis).

Dr. Weiss is highly regarded. I hope he came up with a way for you to have crisis treatment, as well as "regular" treatment. Did he give you a diagnostic letter for your files? You can ask him for that. Any time I have a significant diagnosis, I make sure that I have a statement about what the diagnosis is, how it was made, etc. That will make dealing with other doctors easier.

But Jane, your "story" is only beginning. Living with MG is the real battle. At least you now have a doctor in your corner.

All my best,
Annie