Glad you are OK - sounds like you had a heck of a week! I am still kind of new to all of this MG stuff, but my understanding is that some of the ONLY people who respond to Mestinon are those with MG. That's actually how I GOT my diagnosis - most of my tests came back negative, but I was able to take 90mg of Mestinon with no problem.

Does the neurologist who treated you at the ER have a private practice, or can he/she recommend one in your area who would be willing to look at your ER/hospital experience and just make an MG diagnosis?

I understand where insurance companies are coming from, in that they can't justify expensive treatments for patients without knowing for sure if they have a certain condition (and MG is a lifelong commitment for an insurance company). However, I have a feeling that given your recent experience, an insurance company wouldn't deny your treatment.

They may kick it back, just because they have certain procedures in place, but most of them are fairly reasonable in the end. I'm sure the ER/hospital physician will be willing to work with you if necessary. But in the long run, it's going to be cheaper for an insurance company to make sure that you are on "preventative" treatment (to avoid too many costly hospitalizations), so it will be in their best interest for you to be correctly diagnosed!

In the meantime, you take it easy, OK? You're in our thoughts and prayers -