Cate, Do you want info from a patient's perspective or what doctors "might" think, now and in the future?

Once you've been to Mayo, you'll be "a patient who has been to Mayo."

If the Mayo neurologists proclaim that you're fine, and you're not, no one will dare oppose their opinion. Well, there are probably a few neuros who would.

Mayo doctors don't think outside the box and are very rigid in their diagnostic techniques. That can be either good or bad. The doctors who do the SFEMG's are "learning" how to.

It can be expensive to go there, mostly due to the air fare, hotel and food costs. They may not have your appts. scheduled in a few days. Sometimes you can be there a week.

If you can find an expert in your area, that would be better. It wouldn't cost as much and you need someone to follow your care anyway. Can you post where you're from, in case someone knows of a neuro close by?

You can look at the MDA's website to find a neurologist/MG expert.

Mestinon doesn't necessarily help with double vision. Depends on how bad your MG is or what "type" it is. They're starting to realize that there are "subsets" of MG like people who mainly have bulbar symptoms.

What tests were done for you?

I won't go into my experiences there because it was so horrid and I don't want to color what you do. Erin had a good experience. There's no way to predict what kind of experience you will have. Which Mayo would he send you to? There are three: Minnesota, Florida and Arizona.

Whatever you decide, I hope you get some concrete answers.

Annie