Mike, Ask your sister to keep a diary of exactly when these episodes happen. For example, after eating food or after just waking up or does she smoke and is it after a cigarette or is she on any drugs and is it after taking them, etc.

If someone has been sleeping all night, that might be just enough to gain some acetylcholine/strength back. When they wake up and do a little thing, it's possible that would be enough to make them weaker. If she isn't on Mestinon, then her muscles need acetylcholine and aren't getting what they needs.

There have been examples of people who clench their jaw or face or have rapid eye movement while sleeping who wake up with ptosis. It's all about what the muscles are up to!

After an EMG, which is like inducing exercise, it would not surprise me at all that the most obvious sign of weakness - facial droop - would occur. Those facial muscles are often the ones to "go first." My facial muscles are sort of my barometer of how the rest of me is doing.

Sometimes doctors don't "see" facial drooping because they don't bother looking for it or they don't see it "in action." I had MG my entire life so I didn't realize that my droopy eyelids/eyebrows were a problem. I thought they were my normal until I took Mestinon and it was like a facelift.

Your sister needs to LEARN how to at least be assertive. With MG, she has to be her own best advocate. These signs of facial drooping, etc. are important for her to be aware of, as is the bad breathing signs. Because if she is having sudden episodes of weakness, a huge warning sign for MG, then she may be on her way to a crisis.

Any sudden weakness could mean that there is generalized loss of acetylcholine in the body (i.e., generalized weakness). Right before my crisis, I had these odd, short-lived episodes of sudden shortness of breath. After a bit of resting, they would go away. Those are always warning signs of MG getting worse. I had about six or seven of them within the three months before my crisis.

UNC is notorious, BTW, at not getting back to patients right away. Sad but true. It's not because they don't care but because their neurologists are professors, clinicians, testing practitioners and so much more. And it takes two hours to analyze those SFEMG results!!!

You know why doctors haven't "heard" of these stories? They don't hear them. They ask patients basic questions, do a clinical exam where they "feel" for weakness and then send us off for testing. I have always thought photographs, pulmonary function tests and LOOKING should be a greater part of an MG diagnostic process.

Please tell her to take it easy, especially out in the cold weather. This year has been so cold here and my MG is tanking for the first time in the winter.

If she wants to talk, please encourage her to come here! She needs support. You're a great brother!

Annie