Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
May I inquire, do you have significant general fatigue?
Thank you it does help to know I am not the only one.
The general statement is . "The severity of weakness fluctuates during the day, usually being least severe in the morning and worse as the day progresses, especially after prolonged use of affected muscles." (this one from http://www.myasthenia.org/HealthProfessionals/ClinicalOverviewofMG.aspx )
I tried to stop taking mestinon about 5 pm and then not do anything physical after that and then took my first dose about an hour before I had breakfast to get me going again.. I had bad leg cramps at night and thought they were lessened by stopping mestinon .before I went to bed.
I took as much as 120 mg per dose as often as every 3 hours to be functional during the day, although I did better on 60 mg every 2 hours. My wife was going through stage 4 cancer treatment and needed my help and functionality. to help her through it. (She made it OK). So I told my neuro I had to be functional right now rather than being able to wait until prednisone worked.
Eventually (5 months) prednisone (60mg/day) got rid of the MG symptoms and I quit taking mestinon. My neuro said that as I tapered the prednisone to the lowest effective dose, she thought that I should go down to where I needed some mestinon along with the prednisone so I could drop it lower than prednisone only. Prednisone was worse for me than mestinon.
I was one of the 15% to go into remission which has continued fro 3 years now. But my neuro tells me in most folks it returns again.
Good Luck.