crmak,
I've also though about your question about problems diagnosing MG by the medical community. I have read some pretty sad posts from people who seem to be getting poor treatment while waiting a long time for a diagnosis. I was lucky to quickly test positive for AcHr antibodies (if you've got to be positive, it might as well happen fast). The AcHr negative people seem to have to jump through way too many hoops.

I don't think there's just one answer to your question but I believe doctors are trained to "do no harm" in the case where they aren't sure what to do. The Hippocratic Oath contains some words to that effect as well as other medical ethics teachings. If you search "first, do no harm" you will see a lot of content and debate.

So, in the spirit of cutting the docs a bit of slack, it may be best to do nothing when you don't know what to do. It's also probably best for the patients to start squeaking when they can't get the diagnosis or treatment they need.

I know what you mean about stress and MG and it's no fun at all. Lastly, I'd like to ask why you take mestinon only twice a day. That is not typical since it usually wears off in about 4 hours. That means you are spending much of the day without the mestinon working for you. Most people seem to be prescribed about 60mg every 4 hours. The schedule you are on wouldn't work for me and actually I sometimes go to 30mg doses every 2 hours (my neuro said that was OK for me).

I was really scared last winter when I was diagnosed. As I figure out how this whacky disease works, I'm less scared but I sure don't like having it. Stopping meds doesn't sound like a good idea without talking to your docs. If you need to go to the ER because you feel you can't breath, just do it. There's no need to be scared if you are willing to make the ER visit.

I hope you feel better soon...