Hi Steve,

Did the neuro want to test for MusK before testing for the AchR antibodies (binding, modulating, blocking)? That's unusual and might be why your insurance is confused. Maybe?!? You definitely need to be tested for those antibodies. The best place to use is the Mayo Labs (they have arguably the best mg lab in the country), they'll test for those and if there are some positive results they will reflexively do further tests. Here is the link to the lab information:

http://www.mayomedicallaboratories.c...Overview/83370

And here is the algorithm they use to decide which tests to run:

http://www.mayoreferenceservices.org.../MGADA0709.pdf

And finally, here is the link for the MusK test:

http://www.mayomedicallaboratories.c...Overview/91445

If you send the first link to your neuro (although maybe it's time for a new neuro?) he can call the mayo and they'll send him a kit and instructions for taking a sample. It's easy to do, I know because I had my pediatrician do it for my son.

Also, your neuro should be talking about other neurological tests: the best for mg being a single fiber emg, but short of that (or in addition to) a nerve stimulation test and a regular emg. You also need to be checked for thymoma with a cat scan (don't worry - it's removeable!).

Honestly, your situation is making me nervous. Why hasn't your neuro talked about doing this? Why doesn't your insurance cover diagnostic tests? Geez, that's not insurance, that's just taking your money.

Steve, as you know, celiac and mg are very serious diseases. A lot of us have gone through a lot of doctors before we found one knowledgeable enough to diagnose and treat us. Please, please question and question and verify. Don't be afraid to look for second, third, fourth opinions. It took me six neuros before I found one who knew what he was talking about when it came to mg. If your insurance continues to refuse to diagnose you then don't be afraid to appeal their decision. Really, I went through a period of time when I thought I had gone crazy because it seemed so unbelievable that the docs didn't know what they should have and the insurance was such a pain.

You've made some really good, smart steps into researching this. I can tell you're the kind of person who can ask the right questions. Keep going! Keep asking questions. Keep pushing the docs.

Ally