1. Do any of you who have eyelid weakness also have problems with eyelid pain? If so, to what degree? I started having eyelid pain in 6th grade, severe enough that I would press my face into my desk at school trying to get some relief. Can anyone relate?

2. Do you have any changes in your reflexes? Brisk? Diminished?

3. Were you positively diagnosed by antibodies, EMG, Tensilon test, something else? How long did it take?

4. What have been your experiences with EMG's? Have you had a positive result, was it on the first try?

5. What have been your experiences with antibody testing? Has anyone been tested for anti-VGKC antibodies? Know anything helpful about them? I read the Mayo Clinic protocol for MG testing, and couldn't understand it; do they expect VGKC ab's to coexist with AChR antibodies, or do they test for it in the absence of a positive AChR-ab test?

To answer your questions:

1. no. I have not experienced such symptoms.

2. I have normal-brisk reflexes.

3. I was eventually diagnosed by the combination of direct measurement of muscle force and endurance, and demonstration of anti-MuSK in a newly developed test. Both those methods are not routinely used in the diagnosis of MG, and are still considered experimental by some. It took about 5 years since my hospitalization in the ICU, with the diagnosis of myasthenic crisis.

4. My EMGs were repeatedly normal.

5. As above. All my other antibody tests were repeatedly normal. The antibodies you have mentioned are for the diagnosis of LEMS.