I am so sorry you got this kind of treatment. I can't believe Mayo-Rochester neuros are still being such, well, you know.

Did he say if it would be a regular EMG or a SFEMG? And did he know that the Mestinon and IVIG would most likely make any tests look negative when they are probably positive? Duh. It would be like giving away free money for nothing. Or your insurance company's money.

You have a positive MG antibody and both Mestinon and IVIG work. And this doctor says to stop taking all meds without looking at your records or waiting for any test results?! Um, I believe that's malpractice, not to mention damn dangerous.

The problem with Mayo—much of the time but not always—is that they are the definition of doctors acting like gods. They do not respect the opinion of doctors from other institutions. They need to have the final say on all things. Believe me, I know that personally.

Is the neuro you saw there an MG expert? If you want to PM me to talk about it in private, feel free. There are residents now who are seeing MG patients and acting as if they know it all. They are still being trained as neurologists, even though they are internists and have gone through the neurology specialty education.

I think you might need to ask to see Dr. Harper (Mayo), unless he's the one you saw. He is an expert.

I don't want to upset you any more than you probably are. So what was the reason for going to Mayo? Sometimes, too much doctoring is a bad thing.

In MN, many "regular" neuros defer to Mayo. It's as if they can't make up their mind about MG on their own.

Do not stop taking your meds. The Mayo doctor did not prescribe them and does not have the authority (god complex) to tell you to stop them.

What can I do to help?


Annie