You may also want to take a couple of pictures of your eyelids at night (which is generally when they are worse) - my neuro STILL thinks that I am doing "OK", because she sees me in the morning, when my eyelid is at its highest....

Granted, my MG was caught fairly early in the game - I went to see a neuro-opthamologist, thinking I might be getting some plastic surgery to remove extra fat pads. A simple 5-minute test with an ice pack had me making an appointment with a neurologist....

I STILL test negative on the antibody test and the nerve tests. Most doctors don't like to do the Tensilon test (mine did it at my request - not fun). My doctor was willing to let me do a Mestinon trial (I think she thought that it wouldn't work) - when I was able to take 90 mg without getting violently ill, that was enough to convince her that I did, indeed, have MG (MGer's are among the few people who can tolerate ANY dosage of Mestinon - 120 mg made me feel like I was gonna die).

But the Mestinon trial is the LAST thing to try - see what the other tests show first. It took about 3-4 months from that first opthamology appointment to get a "final" diagnosis.

Every doctor that I talked to said, "You don't want to have this disease." Well - duh. But if it's what I HAVE, I'd kind of like to KNOW that I have it, so that I can do my own research, talk to other people, know what to look for, etc.

Obviously, nobody WANTS to have this disease - but it's a relief to have a name for all of the symptoms that you've been having, and not to feel like you're some sort of hypochondriac....