I wanted to let you all know that I went to see my new neuro on Fri. and he is fabulous!!! He went over my test results with me and was so patient in explaining things to me. My antibody test was pos. for binding and blocking. He didn't see the results of the modulating so I don't know about that one. My EMG also came back pos. for MG. He said I do have generalized MG and started me on Mestinon. He told me to start with 60 mg 3 x a day and I could work up to 120 mg 3 x a day. Unfortunately yesterday morning the nurse called to see how it was working and I told her I wasn't having stomach cramps but was waking up sick in the night from the excessive saliva. She had the Dr. call me back and he told me to quit taking it for 2 days and call him back on Wed. He said we may have to try something else including steroids. I am so disappointed but think part of this may have been my own fault. I was drinking milk to settle my stomach and am sure now that it was making the saliva harder to swallow. I am going to ask him if I can give it another try and drink it with a glass of water. Have any of you ever had this side effect and have you found anything that helps with that? It is so gross to say but I felt like I was literally choking on my own saliva. Within 6 hours of not taking the Mestinon that was completely gone.

I also had a CT scan of my thymus done Fri. I am hoping and praying there is no thynoma because I am terrified at the thought of having it removed. I will if I need to but truly hope I don't. The nurse told me that their hospital does the robotic approach and it is less invasive and cuts down on the recovery time. I guess that is a somewhat encouraging. Sorry for the long post I just needed to vent for a minute. I think the reality of this disease is kicking in and I am still trying to figure out why it has taken so long for me to get a grip on what is happening. I have talked with my husband and family but it is so hard for them understand what has happened to me. It is so nice to be able to share with others who understand completely because they are living it too.

PS-Welcome to all the new folks!!! I am trying to catch up on posts right now
Kendra