Sheila -

Is there another reason that you're taking the calcium and magnesium supplements? They do affect how your muscles work, but, from what I've read they don't affect the neuromuscular junction, which means they aren't going to do anything for the side effects of Mestinon. Mestinon side effects result from having too much acetylcholine in the neuromuscular junction, causing the muscles to fire continuously, which causes the muscle twitching and cramping. If you're only taking them for the Mestinon side effects, you may want to talk to your doctor about how much you need them.

Also, even though it doesn't sound like this is a problem, one thing you might want to keep in mind is that too much magnesium can exacerbate myasthenia in some people.

What muscle fatigue were you having that the Mestinon is helping with?

Jen

I've had some Charley horses but I don't think they are caused by the mestinon. I don't have any side effects that I'm aware of from it. As someone else mentioned be careful with the magnesium as it does exacerbate MG is some people. I take one every other day. I take calcium, potassium, and manganese daily. You muscles function on a calcium potassium pump so these are the 2 key minerals do deal with muscle cramping. Magnesium and sodium are also important. Stay well hydrated to keep your muscles lubricated. You should be drinking a couple of quarts of non caffeinated liquid a day, water, crystal light, iced herbal tea, I love lemonade myself, some people say that lemons can exacerbate MG so you might be careful with that. I used to get horrible muscle cramps in my legs at night ( this was pre MG diagnosis), massage and heat helped a great deal. If you want to massage them your self get lotion and move your hands in strips up your legs. This will help move lymph up your leg. Your lymph system doesn't have a pump to help move fluid so it can sometimes settle causing swelling, and keeps it from getting the nasties out of your system. I hope this helps.

Thank you both so much for your comments. I had a doctors appointment today, so I was able to discuss my side effects with her too.

My symptoms of fatigue are mostly located in the fronts of my legs, down my quads, and in my arms and the back of my neck. I was caught off guard a couple of times when my legs would just give out on me while hiking and going down stairs. The Mestinon does seem to help me be able to climb the stairs in my new house, and not feel like I am going to fall when walking.

My doctor has said that the Mestinon is what is making my muscle's cramp up more, but I was prone to muscle cramping in the past. We're going to look into my lower spine and see if there is anything else going on that could be exacerbating the issue. The muscles that are opposite the fatigue prone muscles are the ones that seem to react to the mestinon with cramping. (Front of legs weak, back of legs cramped) I also feel a little soreness in my neck which I never had before starting the medication.

I have found that taking a hot bath at night helps the cramping a lot, and allows me to feel relief and calm so I can get a good night sleep. My doctor stressed to me that having MG means that getting enough rest is extremely important, so I've been making that a priority too.

I will check back with her about Calcium and Magnesium, but it was my primary care doctor who suggested that I take them, and in the past when my legs had charley horses, I always found it to be helpful.

Thanks again for your thoughts!

I can't stress how careful mg patients have to be with heat and hot baths etc. Heat can throw you into an immediate crisis or very bad downturn. Also magnesium is a muscles relaxant, it is used to stop contractions in pregnant women iwho have gone into premature labor. it has adversely affected me so now I take a calcium only pill and eat lots of pumpkin seeds which are full of magnesium but doesn't have adverse affects.

Also, before my myasthenia was controlled I got terrible charley horses in my calfs, but once I was better controlled they went away. Now I get them if I have overdone it and the mestinon isn't helping. There is a fine line between taking too much mestinon and not enough, and with you it almost sounds like maybe your dose may be too low. If I take too much mestinon I will get twitching in my back and tongue, if I take too little or have overdone it that day I always get muscle twicthing in my calf muscles. Something to discuss with your doc
Judy

Hi. I don't have MG but suffered from terrible cramping like yours for years until a doctor discovered that I have extremely low iron stores. After my first iron infusion the cramps went away totally. It might be worth checking especially if you have a double whammy of fatigue from anemia and MG.

Thank you for all the thoughts. My primary care doctor checked me for Iron deficiency, and I don't have one, so no anemia problems for me. (Must be all the Kale and Spinach I eat!)

As for hot baths, I have been enjoying them at the end of the day, as a way to wind down and relax myself for sleep. I do notice that my muscles are weaker due to the heat, but if my next stop is bed, it hasn't been a problem.

I also stopped taking the Calcium/Magnesium and am sticking with a simple once a day multivitamin.

As for my Mestinon dosage, although it is very very low...I think it's the right amount. Too much was absolutely causing the muscle cramping and sore/achey muscles. My doctor had me cut my daily dosage in half, and since then I have not had any charley horse symptoms and my cramping has been lessened. But I haven't had any worse MG episodes.

I have been taking B-Vitamins as well to help my nervous system, and one thing I have to add in complete honest assessment of my health, is that I have quit smoking Marijuana, and that has had an extremely beneficial affect on my MG symptoms. I believe that smoking could have been causing my immune system to be depleted and thereby adding to the MG. And as a muscle relaxer it made the symptoms much worse. Since quitting about a month ago, I have much much more energy and I do not get muscle weakness and spams which I used to get in response to smoking.

It's sad that it took a medical diagnosis to convince me to give up the bad habit, but I didn't realize how much of an impact it was having on my health. I have not had a MG symptom (My leg muscles used to give out on me on the stairs or when trying to stand up from the floor) in the last month, so I directly attribute it to making this positive change in my life.

Thank you all for the support and thoughts. My health is changing for the better, and this community is very helpful.

Hey nothing is sad if it helps you into doing something that you find helps you.....good for you. I had to give up my wine, which I enjoyed in moderation but now even one glass is bad so I don't even try it anymore.

Hi there. I recently got a foam roller (you can find them on amazon) and it has helped me a lot. I used to get muscle spasms and cramps and now I virtually have none. It also feels really good - second only to a professional massage! There are lots of videos online showing how to use it for your legs, back, etc. Hope this helps.

Catskills,

I get the muscle cramps in my calves at night. I have learned to be in tune with my body and when I feel it coming on, I immediately stretch my foot up towards me (never away) and that will stop the cramp in it's tracks and try to never stretch your legs while you are in bed... that will bring them on.

I just started Mestinon & have the most painful Charlie Horses & muscle twitching, chest pains, & headaches. I even cut down on the dose. I may have to quit taking it, but I am allergic to Prednisone; so options are slim. I was just diagnosed like a month ago but I have had it for some time now. I don"t know what to do. I am looking into herbal help, but don't know if there is such a plant that helps. I suppose if there were we would be taking it, much safer. Thanks & nice to meet you all.

My wife started having very bad charley horses 2 days after taking mention which was on 4/5/18. She had charley horses for 3 days then went into severe pain in both legs and goes to the back. It also makes her freeze up cannot walk or move. This keeps us up day and night. She has Parkinson's, but this is not due to Parkinson's, I have talked to the group of many. We went to mayo clinic they did brain scan, MRI of pelvic area blood test all ok. They gave her gabapentin 100mg we at 300mg now. The pain can come on during day but mostly at night for 2 to 4 hours. I have done all things on a forum for Parkinson's have told us. They will not stop. Vinegar and water, pickle juice, mustard cayenne pepper in oil, Tylenol, exercise her legs, rub blue emu, cheated magnesium and calcium, turmeric. Also drink plenty of water. Very disturbing to us both. Seems like doctors do not care and been no help locally. May need go back to mayo, but we need daughter to drive us it is 100 miles away. What can we do. We know how you feel. After 2 weeks we stop taking mention but it appears damage has been done.
Good luck shiela

Sheila,
Doctor gave her margin in for low blood pressure not mg. She does not have mg. I forgot to mention this.

That is mestinon