Simon,

I have trouble speaking sometimes.

Before I started Mestinon it was hard to speak, it is so frustrating and emotionally painful not to be able to say what you want to say. Sometimes my mouth would just not say what I wanted to say. My voice actually changed and I had difficulty making noise come out of my mouth. It is hard to describe what it feels like.

Now that I have been taking Mestinon for a while (5 or 6 months I think) I don't have major speech problems. But I still can't talk as much as I did before MG. I have always been a fast talker and I am working on training myself to talk slow and it is so hard to change, I actually skip saying some of my words since I am used to saying it all so fast. My opinion is that once I learn to say everything slowly that I will be able to communicate effectively again.

I do lose my ability to speak if I get stressed, which causes more stress since I am unable to talk about what is bothering me. My husband tells me I go and "hide" when I get stressed and he doesn't like it. What else is there to do? If I keep trying to talk I get more stressed and then I feel even worse MG symptoms coming on, too dangerous to stay and continue trying to talk! Resting does return my ability to speak.

Now that I think about it, double vision and speech problems are the first sign that I need to take Mestinon or rest, they are like my danger signal and I have to stop what I am doing and take care of myself (or face worse symptoms).

Simon I hope you don't lose your voice again. This is no fun.