Myasthenia Gravis Support Group

My daughter's smile and her slurry speech are the first signs for me that it is time for her to take more mestinon. She takes her mestinon as needed. Some days that means one or two other days it may be seven or eight. Lots of things seem to make her mg worse, hot or cold weather, financial problems, stress of any kind, etc, etc. We changed neurologists about a year and a half ago. When the new neurologist first saw her at the MDA Clinic, he thought that she was probably taking too much mestinon so he asked her to reduce the number she took. He also did a blood test at the same time. When she cut the mestinon to what he thought should be an adequate amount, she got weaker and weaker. Fortunately, it was only about 2 weeks until she had her second appointment. Her antibody level was out of sight on her blood test. He said that we were very fortunate that the reduction in the mestinon didn't cause a crisis. She was also taking prednisone and Imuran. Mestinon is such an individual thing and for her varies so much from day to day.

My smile is one of the saddest losses from this illness. I used to have a nice, big, happy smile and my face just doesn't do that anymore. Mestinon can help, as can some other drugs and rest, but it's never been the same. I've tried some facial exercises that I found on the internet, but I don't know if it helped (http://www.pinkvilla.com/beauty/skin-care/facial-exercises-0).

After about 2 years, I have grown used to the reduced smile. Instead of smiling with an open mount, I smile with a closed mouth. I also try to express more joy with my voice instead of just with my face. I think people still interpret my expressions the way I want them to. Get rest before I'm going to be interacting socially helps a lot, too. Sometimes, when it is really bad, I even make jokes to my friends like "you probably can't tell, but this is me looking really happy."

I know this is hard because there is nothing more personal than your own face. But trust me, you will adapt and people will not think you are angry or unhappy. This is just something you have to learn how to deal with.

Hi

I have a similar problem tho not as severe. I can smile but the muscles on my right cheek move less than the other. This makes it lopsided. This has been going on for a couple of months now and i am still pretty conscious whenever i smile, but I guess we will get used to it soon.

That is the great thing about being human - we can adapt to almost any situation.