Thanks so much Annie. You've been a big blessing to me in answering my questions. I live in central Missouri, about a 6 hour drive to Rochester and a 2 hour drive to St. Louis.
I thought I would update. I did get an appt. at Mayo, but it is not until October 23. The lady I spoke with said I should call every few days and see if there has been a cancellation, and that I might get it sooner. She said it would be with a doctor that treats MG, but I didn't get his name. I am sure it will be included with the packet they mail to me. So that was a few days ago.
Then my acetylcholine receptor antibody test came back yesterday. Binding and blocking were both negative. This was the lab that was having the instrument problem, and it took them 16 days to get my results. So, I am not too confident in this result, but I also know that it doesn't mean I don't have MG. The good news is, my neurologist is referring me to a neuromuscular doctor in St. Louis. Hopefully, I will get in soon. The Mestinon works like a miracle for me, especially for my walking. I am now taking 30mg every 4 hours. I was an hour late yesterday and I could not walk normally. My mom and I had to run to the store and I required one of those motorized carts. It was quite humbling for someone who was very active and independent before this came on. But, within an hour of my dose, my legs work normally again. I do still tire easily and don't have much endurance. And, I can't talk for very long before I just get tired. My mouth gets tired and I just run out of breath while talking. That is such as weird feeling. I did go in to have my o2 sat checked and had a chest x-ray (I have had a cold and cough), and I checked out okay. Another very interesting effect of the Mestinon is that my ptosis improves and my eyes "match" again. For about three years, I have had slight ptosis in one eye and in the other eye, my lower brow dropped. This was how the ophthalmologist described it when I had it looked at back then. So they were very uneven. But now I am thankful I am looking more symmetrical and less tired! I should share pictures sometime.