It's the Mestinon. Moving my legs from the position they cramped has worked for me so far. Why are you avoiding Prednisone? Mestinon is a temporary relief drug.

Try drinking more water. I have a metabolic problem (as well as MG?) and when I drink a little less while busy at work or traveling, I get terrible leg cramps. The next day I drink more water and they are gone. Maybe try a multi-vitamin as well as the B vitamins in it can help prevent cramps.
Flutebell

Thanks guys - I'll move around and drink more!

tedill: I'm avoiding Prednisone for now because I am concerned about the side effects and hope (as has been the case in the past) that the illness goes into remission of its own accord. Its not that I'm resisting medical advice, just that its the "next step" and I hope it wont prove necessary. If I am lucky...
I realise that Mestinon only treats the MG symptoms of course (and, it turns out, gives me leg cramp!). Thx

About the prednisone, StronginLondon I think you are wise to wait it out, depending on your disease progression. I was SO ready to go on prednisone (and the immunosuppressants too), but my Neuro's evaluation of me didn't support it.

My symptoms are fairly mild, especially compared to others, and he said I could go on like this for years before the disease kicks it up a notch or two. He said why risk a devastating illness by taking the big drugs. I was feeling like crap, and did not agree at the time, but in hindsight believe he is right. Mestinon and lots of coffee keep me going. I'm sure this is rare.

Everybody is different though. My eyes are pretty good, my breathing is fine ; that's not so for others.

I respect your decision, and am in the same boat at this time (and NO, the name of the boat is NOT Titanic !)

Take Care! Chris.

I started the Prednisone about 2 weeks ago and have been on the Mestonin about 2 months. YES had leg cramps regularly (if not nightly, close to it). I can't say i have/had a magic cure, but just stretching it felt better. Interesting because the cramps I get were in my calves too (sometimes bottom of my feet).

Not excited about being on Prednisone, but it is giving me a bit more stamina. By the way, no diagnosis of MG for me.

Take care all.

I get terrible leg cramps and will wake up screaming in the middle of the night. Hydration seems to have nothing to do with it. It seems to happen on the days I've done a lot walking and I'm tired. I've tried everything including prescription potassium. Many times they are so bad I am not able to stretch or stand on the leg. The only thing that helps me is wrapping a heating pad around the muscle. Vitamins have done nothing for me.

On Mestinon only since diagnosed, about 18 months. Symptoms primarily bulbar. Like MGOhio, hope to avoid immunosuppressants for as long as possible. I have read from more than one source that the disease peaks in severity after about 2 yrs. Still confused about that, but hoping it is true... Always very watchful for the slightest signs of breathing trouble, at which I will immediately head for the hospital, a 15 min. ride. As for leg cramps, both walking, if it breaks a sweat, and dehydration will definitely cause cramping... in calves, and feet/toes, primarily at night. If it appears likely that I will be cramping up, I prepare a salad with plenty of salt in the dressing and eat it 30 min. before going to bed. I find it helps almost all of the time. May sound strange, but I think there might also be a connection with fried food, and or sugar?? Wish you well, HG007....

Usually the more painful kind will happens with larger amounts of mestinon, but it doesn't have to be a large amount.

If you cannot reduce your mestinon, try eating more potassium. Eat more bananas and potatoes.

Hang in there!

I get bad leg, and foot cramping almost every night. Sometimes walking and stretching it, but most of the time I end up wrapping a heating pad around the spot, and if it doesn't quickly stop the cramping I get in the shower and run hot water over the cramping areas. I know heat is supposed to make our symptoms worse, but a lot of the time it is the only thing that works for me. It can get extremely painful.

Arghhhh!
I've tried everything! Stretching, walking, resting, massaging, drinking loads, salts, glucose drinks, warmth, cold, potassium...
It always happens in the evening - maybe I could reduce just my evening dose a little to see if that helps. Might be worth suffering a few more MG symptoms in the evening if the pain goes away alongside...