There are doctors who are afraid to claim a diagnosis without an expert's opinion. Don't see her as not believing that you have MG, but rather her personal inability to commit to that. Yes, most of this is all about the doctors and not us!

Wait until you see the expert, unless you do have serious symptoms. Do not wait to go to the hospital!! MG can tank rather quickly and there's no way to know how quickly that will happen.

You can set yourself up for success at that hospital. You can always call their patient representative and ask a bunch of questions. Ask if they have a protocol in place for MG patients and what that is. Ask for a copy of it! And then, if you have to go in, you can bring a copy of that with you!

You're lucky that she is taking that chance and giving you Mestinon. Try not to read anything into who she is or how she sees you. Heck, they forget about patients the moment they leave the office! For them, this is a job. I'm glad she gave you Mestinon, or you might be in real trouble right now.

I see my neuro once a year, unless I'm doing worse. If I'm very weak, I would just go straight to the hospital!

Maybe you just need some reassurance! Please know that there are very few diseases that act like MG. Only LEMS and the CMS's do. The chance of you having a positive response to Mestinon and not having MG is very low. Try not to doubt what your instincts are telling you! I know that it's hard without rock solid proof, but many conditions doctors treat have even less proof than you have for MG!

I really hope they can figure out a way to completely diagnose you! A muscle biopsy would be another thing they could do. Have you had breathing tests? Have they shown a restrictive pattern? Have you had MIP and MEP? Do you have copies of those tests?

There is a lot of evidence to be found in someone with MG. There's Cogan's lid twitch.

Cogan's lid twitch sign - YouTube

There's enhanced ptosis. When a dominant droopy eyelid is pulled up, the other eyelid goes down while the dominant one raises. Then they play seesaw for a bit!

Enhanced Ptosis in Myasthenia Gravis | JAMA Neurology | The JAMA Network
Enhanced ptosis, mg, - YouTube
Medscape: Medscape Access

A smart neuro will look at EVERYTHING to base a diagnosis on, not just negative tests. A negative doesn't prove anything!

I hope the appt. goes well and that you finally have answers soon!


Annie