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...
Be well,
Good Luck
Several of us here on DS, in addition to MG - we have another auto-immune syndrome called cramp-fasciculation-syndrome (CFS).
The symptoms are similar to what you describe.
Although these symptoms seem far more common among people on DS, having Mestinon involved in what you are seeing.
- Ross
PS: If you search this website (slow as it has become), or Google ''cramp-fasciculation-syndrome'' - you will find plenty of info.
PPS: It's always something, huh?
A famous saying often attributed to George Burns:
Question to George: ''How do you manage to keep going like you do?''
George's answer: ''I wake up every morning - just to see what the devil is gonna happen next!''
I had muscle tremor in the right leg when tired and also had the double vision. Those were some of my first symptoms before any tx and the tremor got worse at times. It was during a sleep study they found my oxygen was dive bombing and the leg was having constant tremor due to low oxygen. Since going on the mestinon I rarely have that particular tremor and have been able to wean off the oxygen.
I do have another type of leg thing that happens at night when I am in bed. It is called periodic limb movements. It is a bit different then restless leg syndrome and you can read about the differences on line in several places. For me I was waking up with my legs and feet locked into odd ballet positions and I could not change them. Just being silly about the ballet... but it was uncomfortable. I take ropinirole for it before bed and it is much better.
I still have muscle jerks and starts at times particularly in my legs and feet. They seem to be related to my neuropathy. I have both small fiber and large peripheral types.
I don't think mine is due to taking medication as I have never seen more of it with taking more meds. What is true for me is not necessarily true for someone else. Mine is ore likely to happen when tired and low on mestinon.
I can't speak to prednisone as I have only taken it for short periods and did not have that response....but someone here may have had a different experience.
Good luck figuring this out and let us know if you do...Marie
Mine are not painful, so that's a plus.
Carly