I wish I would've been more assertive with neurologists early on, but I wasn't. Here are some things I might've asked or said. I hope it helps.


You've told me what you DON'T think is causing my ptosis and weakness, but you haven't said what you think MIGHT BE causing those things.

Sleep apnea doesn't cause ptosis or generalized weakness, but MG can cause sleep apnea or hypoxemia.

What other disease shows a dramatic improvement with Mestinon and IVIG? Are you going to test for that?

How can a patient test positive on an AChR antibody test and not have MG? What else causes a positive test result?

How can you not look at test results and doctor notes—without seeing any new test results—and declare that I don't have MG? Is that scientific? Is it objective?

Do you have x-ray vision? Can you "see" the neuromuscular junction? (There you go, HT, a clarification!) I know, that one is a bit too snarky, but there was an occasion that I wish I would've said that!

If my eyelids are already at the weakest they're going to get at this time, there might not be any change with an upward gaze test, right?

Are you an MG expert? If the answer is, "No" . . . you might say, "I'd like to see an expert, please. Is there one here?"

How many MG patients have you seen?

Wouldn't an EMG or a SFEMG look negative when someone is on the drugs that improve the autoimmune process that is causing weakness?

Why would I want to pay for a test that would most likely be negative?

Is there a reason you don't trust what my neurologist has written or done to evaluate/diagnose MG?

Do you not trust what I am telling you?


Sometimes it's hard to be assertive while you aren't feeling well, and especially when the doctor is being so absolute and contrary.

I hope things are going better.

Annie