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Old 07-25-2018, 10:34 AM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Yes, the muscles of the face tend to be positive early on in MG. You can test yourself for ptosis or double vision, but you could see a neuro-ophthalmologist as well.

Put your pointer finger in front of your eyes about a foot away. Slowly move the finger back and forth in front of your eyes, while your head stays still. Do you see one or two fingers? If you see two fingers and close your eyes, do you then see only one? That is called "binocular double vision," and is typical of those who have MG. The muscles around the eye focus differently, due to weakness.

You can also take photos of your face in the morning and then later in the day to see if you have ptosis. Some people don't even notice they have it.

Do you become worse in hot weather? That is typical of those with MG. So try to stay cool. If you do become too hot, cool down right away, and even take a nap if you can.

The Single Fiber EMG is difficult to do, even for those with experience. The fact that you had 20% decrement is very telling.

Mestinon rarely has a placebo effect. Does eating food have a placebo effect? If a person without MG were to take Mestinon (which many Gulf War service members did), they would have symptoms of diarrhea, excessive tearing (eyes watering), increased bronchial secretions, twitching and cramping muscles, etc. from an overdose of acetylcholine. People with MG just become better on Mestinon.

I can't say if you have MG. But you seem to have the signs and test results indicating that. You probably need a long conversation with the doctor about doing other antibody tests, what treatments there are if you have MG, and what the next steps might be.

You could always consult with Dr. Eymard. Many people do.

If you do have MG, there is a lot to learn about it. I don't want to overwhelm you with info until you have a solid diagnosis. If there is anything you need, please ask!

Annie
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