Myasthenia Gravis Support Group

I am certainly not a doctor, but I do know from reading that taking too much mestinon can cause the same symptoms as not taking enough.

Sometimes I would get crazy cramps in my calves and toes. The leg cramps would happen during the night when in bed. The toe cramps would happen mostly while I was driving barefoot (Living in Southern California, I wear sandals a lot).

I soon figured out that wearing shoes while driving really cut down on the toe cramps. My toes would also wiggle on their own for long stretches of time.

When I asked my Dr. what was going on, he said that these were side effects of the Mestinon.

I also have MS and before my diagnosis of MG I was receiving IVs of prednilisinone (Solumedrol) and the effect was fairly short-acting for MG symptoms. I ended up in the hospital with severe weakness. My neuro will not prescribe IV steroids because of this possible effect. I think this is the drug you are talking about. I, too, have heard that too much mestinon can make symptoms worse.

Wow. You are on some high doses. Why no IVIg? And no discussion of thymus gland removal? My daughter went from very active to bedridden in about 8 weeks until her thymus gland was removed. It's not the same for everyone- but, in her case, I believe it saved her life. She now attends public high school most of the time. I think you need a different approach than just upping the meds. Let us know. Thanks. Sarah

Wow, I agree with some of the other comments. First, you could be taking too much mestinon. Too much can have the same effect as not enough. Second, it seems like you should be trying some of the other options. IVIG worked very well for me. I think the thymectomy helped stop my decline. There are also other immuno-suppressants that you can try.

Another note about prednisone - when I first started taking it, it made me weaker. It was about 4 to 6 weeks before it really kicked in for me. Once it did, it was like magic and I did have the energy rush that your doctors mention. It also makes me tired right after I take it, so I started taking it before bed and that way I'm not tired when I wake up. Be careful about relying on it longer than you have to, though, because the side effects are terrible. Whether prednisone works or not, you do not want to be on such a high dose in the long term. You should be switching to something else as soon as you can.

Thanks for all of your comments. As is turns out I was in the hospital for the past 5 days getting IVIG treatments. They have begun to help and I hope they continue to. At least now I can swallow pretty well and talk (as long as I don't try to talk too fast or too loud). My neuro told me that I have the worst case he's seen in 15 years and I'm the first patient he's had to hospitalize in 10 years. I also have another doc looking at my case too. So if the IVIG hasn't imporved my condition as well as they would like, we will be looking at other options. Bless all of you & thanks!

taun - so glad to hear you are doing a bit better. My husband has MG. He also struggled with meds when he first started on them. When he was first diagnosed in June 2007 he had surgery to remove a large thymoma tumor of his thymus gland. He did fine during the surgery but within a week he became weaker and weaker with trouble speaking and swallowing. He did go into crisis but made it through. That's another story. He was so new to MG that he wasn't stablized on his meds yet. He was diagnosed with the Thymoma first on a Saturday night in the ER. The following Thursday as we were trying to decide about the surgery he needed to remove the tumor, the blood work came back showning he had MG. He started taking Mestinon that day. The next week on Tuesday he had the surgery to remove the Thymoma. I know now this was too quick. He should have had IVIG to give him a boost first. He now has IVIG once a month and if there is a surgery to be done they do 5 days in a row of IVIG first to give him a boost. He is on mestinon 4 times a day and takes 90mg/60mg/90mg/60mg at 8am/Noon/5pm/9pm respectively. The timespan never worked for him. It didn't seem to last and most people with this disease are too unique in how much they need at any given time each day to use the time release version. He was on steriods too. They used the iv type while he was in crisis and then switched to the oral type when he was able to swallow again. He is also on Imuran now instead of steroids. This seems to be working ok for now. I hope you continue to get stronger and that the meds work for you. God Bless!

Is your Dr. affiliated with the MD chapter in your area? Why is your prednisone given by injection and not by pills?