Wow Thought that just happened to me lol. U taking mestinon? It dehydrates you. I drink a lot of water seems to help take care.

You need to get that checked right away, could be dangerous.

Oh yes have had cramps from hell ! Walked the floor many a nite. My potassium tends to stay on low side.
Annette

I get very severe cramping in my legs. The only thing that has worked for me is wrapping my leg in a heating pad which I wrap around my leg. I went to Wal-Mart and bought these 6 inch wide rubber "waist trimmer strips" in the sporting goods section and wrap the pad around my leg fastening it with one of the strips. It is the only thing I have found effective.

Since this whole journey started I have had trouble with cramps in my calves while sleeping. The pain is awful and I have to get up and 'walk' them out. Good idear Maricak, I have been wrapping my calves in soft blankets and I think it is helping with the frequency. And yes Debbie, I've done the Vulcan thing too, often while using a knife and fork.
Claire

My neuro taught me a trick which seems to help - sugar free tonic water! They are unbearable! Hope you get better quick!
Nicole

Just a note that tonic water has quinine in it, so it could be potential trouble, I think. I would check before using.

Keeping Mestinon levels even in my blood helped me get rid of cramping, but sounds like you are also aware of the potassium.

Hugs.

I get cramps in left ankle and calf every night. I haven't found anything that will reduce them yet.

I try to keep my mestinon at even level, though I do not set an alarm to take it... I may just need to pursue more potassium and maybe invest in a heating pad. I drink coconut water, eat kale, take 10 meq every day...I will ask neuro about tonic water. My hands and feet are open to all ideas. I'm glad I'm not the only vulcan in the group.

I, too, have been experiencing Charlie-horse-like pain and foot cramping. It's weird, though, because there is a deadening feeling combined with the cramps. I've been using heated rice bags for the moist heat and that helps. I have no idea what my potassium level is and will pursue knowledge in this area.

I also have a lot of leg and whole body twitching when I lay down.

Twitching down the grocery aisle with you, Debbie :)
Babette

I guess I should be thankful to be "twitching down the grocery isle as last summer I was not even up to that." Rice bags. Going to try it.

For those who've had a thyroidectomy (removal of part or all of it) and/or parathyroidectomy (removal of one or both of the parathyroid glands) you have to worry about calcium absorption which can cause really nasty cramps, as well. These are usually experienced in the lower extremities and can be minimized by eating tums which are high in calcium. Your thyroid and parathyroid are the body's metabolic center. So depending on how well your glands are working, you may need supplements to normalize your levels.

My potassium tends to run a little low but my calcium runs pretty high. It's because of the elevated calcium levels that I get kidney stones. One way I've minimized my cramping is by eating a banana with one glass of milk each day. It sounds like a really simple fix but it has worked for me. It hasn't taken them away entirely but mostly. I am also low on vitamin D, which aids in the absorption of calcium and other vitamins. So if you run low on vitamin D that can cause these issues also.

Interestingly, I've never had the "live long and prosper" in my hands but I had it in my toes once. You think it hurts when your hands do it????? Holy crap, I almost peed my pants when my toes did it. I couldn't even move it was so intense. Anyway, when it was done cramping it ached for many days. It only happened once but that was plenty for me. lol

Anyway, have your doctors look at your calcium and potassium levels. One or both of them could be the culprit. Let us know what you find out. I'm interested to find out what your doctors have to say about it.

Aloha,
Angie

Still haven't gotten in for labs as the grand ones got influenza, and its been all consuming! I have a touch of it, but tamiflu and brown seaweed seem to be keeping me pretty good.

I've had thyroid radiation because of Graves, and parathyroid removal because of hyperparathyroidism, so I will have them check calcium and potassium, though I take supplement of that as well, with vit. D.

Angie, did you have thyroid and parathyroid issues as well? My neuro is always fascinated that the entire "neck and chest chain have issues."

Deb,

We tend to fit with the multiple autoimmune syndromes headed
up by Hadhimoto's thyroiditis. It is common enough that when I was first diagnosed with MG, my neurologist said to check thyroid function every six months.

Here is one link to type III :
http://emedicine.medscape.com/article/124398-overview#showall

And another that discusses all three types of multiple autoimmune syndromes:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3150011/

Clinically, I don't know how helpful it is to separate these into types as there is a lot of overlap, and when you have seen one autoimmune disease in a patient, you have probably NOT seen them all. Fortunately for me, so far, my secondary ones have not been so serious. Hugs, b.

I suggest you people should try a light yoga to stretch and loosen those sleepy muscles...as well as drench some sunlight daily in the morning time for 1/2 an hour....i did not have it yet, but seems its slowly creeping up !! need to go into safe mode ..