*** SPOILER ALERT!-- I'M VENTING, YOU MAY WANT TO SKIP ***

You've both expressed really well the frustration I'm feeling.
My diagnosis was based on a positive response to mestinon. Now, the neurologist (who's not previously encountered MG) is wanting to step back from calling it MG until I get more proof. So the burden of proof is on me, the patient, to demonstrate this isn't in my head.

I've tested negative for three antibody receptor tests thus far.
I'm waiting on Musk test results, but realize there's a chance having taken mestinon unabated (at their instruction) might result in a false negative.

Accompanied by:
A negative test result from five doctors checking muscle strength rather than checking for muscle fatigue through physical repetition ("nope, not MG")
A negative test result from four doctors who don't recognize partial ptosis as a symptom ("You don't LOOK like you have MG")
A negative test result from a brain MRI (which doesn't diagnose MG anyway).
A negative test result from creatine kinase (which doesn't diagnose MG anyway).
A negative test result for porphyria (which doesn't diagnose MG anyway).
A negative test result from a regular barium swallow which wasn't focused on observing the swallowing mechanism while stimulating fatigue (so it doesn't indicate a possible secondary symptom of MG anyway)
Add to that a negative EKG from visiting the E.R. for aspirating saliva & pain in my sternum (ongoing)....

The frustrating thing... I've attempted to guide them away from useless tests, toward the proper tests and to educate on how to conduct them for accuracy, which they've chosen to ignore. Obnoxious of me? Yes. But in the absence of leadership,... Not being heard is the most frustrating aspect,.. a lot of this 'negativity' could have been bypassed.

Cancer patients will sometimes be assigned an advocate at their hospital. That's what I want. A noisy, squeaky wheel-of-a-person who gives hell and takes no prisoners so I can try & live the stress-free lifestyle touted for MG'ers.