Good plan to not put alot of stock in what tester says sometimes. When I went to mayo clinic I listened and felt and heard they really knew their stuff. They know enough to get the muslces warmed very warmed for best outcome. My univerisity has the testing area in a very cold room in the basement! So of course I always test negative there!!

But at Mayo I got excited as it seemed they were testing so many places more than back here and I was warm tho didnt really know the significance then and how much better my muscles are when cold. So I left messages saying it was positive and boy was I fooled. Yes they found a number of myotonic responses which I assume is why they suspected myotonic dystrophy but no what MG would show. Now this was IN December in Minnesota and I was very very cold on a day to day basis warmed room or not. And I didnt have mestinon out of me as long as I feel I need. It was less than 24 hours but more than the univerisity did allow.

I did learn that the SFEMG is taken more seriusly as a marker for MG so if it doesnt show there and a supposedly expert doc did the test it would be the norm to go with that result. I did find out that Cleveland takes no outside SFEMGS because they are very dependant on the doc that does it. They only do their own (this is per a firend of mine that went there).

I so hope you get the results you want and need. YOur desire to go forward is high. I just ask that you hear that it may not be this time or this place you get what you need but dont give up. YOU know what you know. They dont live in your body. They go by the tests. It stinks but that is the deal. I have had more positive things happen since my vision went the MG way in a flare march of 2010. Before that I didnt have double vision so it was impossible to get anyone to consider my eyes involved tho they and my whole face droop in the gallows fashion.

Annie59

Annie59