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Old 05-10-2018, 11:43 PM #5
AnnieB3 AnnieB3 is offline
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Join Date: Feb 2009
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15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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There's always the ice pack test or a Tensilon test (both done by doctors), since she has obvious signs of ocular MG.

Since one eyelid is dominantly droopy, she could pull up on that one for a few seconds. If she has MG, what should happen is that the dominant one should go up, while the other one goes down. Then they play seesaw for a bit. That is called "enhanced ptosis."

She could also try placing a cool washcloth (not cold) over her eyelids to see what happens.

Is she on any drugs right now? Some drugs make MG worse or can even cause drug-induced MG.

Was her "brain scan" an MRI? Has she had other basic tests such as vitamin B12 and D, TSH, and a chem panel? Patients can have more than one thing at a time. The ear issues could be unrelated. They could also be an allergy, TMJ, having background noises such as fans, etc. Hyperacusis is something that people with MG experience. There are muscles in the ear. MG effects any of the 640 skeletal muscles.

Check with the MDA clinics. The cost of a SFEMG might not be that high.

Have they thought about doing a Mestinon trial to see how she does? She could try Mestinon syrup, where she could titrate the dose more slowly.

I hope she can find help soon.

Annie

Last edited by AnnieB3; 05-11-2018 at 07:40 AM.
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