Originally Posted by Geode

Hi again, it's been awhile.

To refresh your memory, I'm a 42-y.o. woman with episodic weakness spells, sort of resembling MG but sort of resembling Periodic Paralysis. I also have episodes of sustained muscular spasms that don't seem to fit in anywhere. Going on 11 years of seeing doctors with no diagnosis. I would like to ask more questions about your various individual experiences in order to better prepare for my next neuro visit.

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?

Thank you for your input,
Geode