I am glad that you can stay at home and do what you want - I think that is the best thing one can do with MG.

I wish that I could stay at home...my doctor won't support me in applying for disability since it is his opinion that I can work and be "normal". In my real experience, I just can't work full time now with MG (I love to work and I am trying!) and my life is slowly going down hill mostly due to finances and stress. I wish I could relax...I think I could find happiness and have time to do things I still can do.

Now as to Mestinon making weakness worse I have to answer not exactly but sort of in my case. I had a bad experience of taking too much Mestinon and had to have my prescription reduced. I got stiff and twitchy muscles and then started to have a hard time walking, sitting and moving in general but it was due to tight muscles. This is not exactly weakness, but I felt weak since I couldn't function. Now that I know what too much Mestinon feels like I recognize it when I need a little less.

My doctor said not to change my dosage at all, but I have realized that he is wrong in this. Some days I need 90 mg/day and other days I need 120 mg/day but there is not any consistancy in how much I need since every day is so different (and sometimes I CAN go 1 or 2 weeks with a consistant dose like my doctor wants me to). I am frustrated right now in the way my doctor talks to me about my Mestinon dosage. He won't discuss the possibility of me adjusting my dose as I described above. I have to adjust the Mestinon dose or either I get weak with not enough or I get muscle twitches with too much....I have to listen to my body. Now of course if I could stay home and do what I want and only work a little I am sure I could find a dosage that works and stay with it.

Please tell me about any of your experiences with adjusting your Mestinon dosage. I need some opinions so I can talk to my doctor with information.