I'm afraid I don't know anything about the WA docs.

Yes, most neuros will never oppose the Mayo Clinic - even if they are wrong.

The nicest MG expert I know doesn't do SFEMG's. The other wonderful MG expert I know does: Dr. James Howard, University of North Carolina at UNC (Chapel Hill). He is a leading expert on MG, is very good at the SFEMG and is super nice. Yes, I've seen him. It may take a couple of months to see him but it's worth it. He can also order PFT's while you are off of Mestinon but you have to ask ahead of time. What he can do that other doctors don't is get you in for an appt and testing over only a couple days. There are hotels there (Holiday Inn on Fordham road) that have shuttles to UNC and have "medical discounts." You have to weigh the costs, since you are already not doing well in that area. One thing I know for sure, he won't poo-poo you.

The last thing you want is to be bounced all over the place and not get a solid diagnosis. Then they'll not only blacklist you but start saying you are "doctor hopping," hoping the next doctor will confirm something that isn't really there!

Maybe you can ask this WA guy you'll see in two weeks to redo the AChR antibody test. Problem is that Mestinon has actually been shown to have an effect on the humoral immune system where antibodies are produced. Can you even go off of Mestinon? Caffeine does what Mestinon does (read my earlier post), so you have to be cautious about having that before tests too.

I'd love to know the name of the doc you saw at Mayo who said that low titers don't mean anything!!! It's so not true.

Be really careful about what you do next. I have been blacklisted, bad-mouthed, had medical records kept from me proving I have MG, etc. You don't want to dig the hole that I'm living in, that's for sure.

I hope you can figure this all out. It's criminal and inhumane what happens with so many MGers. I simply don't understand why neuros think women are so frail and hypochondriacal. What BS that is.

Annie