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...
I have had symptoms of MG for a number of years.... Tongue goes numb occasionally, one eye droops, when I go for a longish walk I feel like a duck foot, etc. The last few years it's mainly been my droopy eye. Recently my neurologist had me double the mestinon from 60 to 120 mg three times daily. While the blurry vision has improved, I have horrible leg pains (like growing pains). My ankles are so stiff I walk like a much older person than I am. I am also more swollen (legs and ankles especially). I have had to start working a second job, so am unsure if it's due to being on my feet on a cement floor for four hours at a time, or the increased mestinon. My neurlogist wants to start me on Prednisone, but I have been trying doubling the mestinon first. It's been about two weeks. Do others have leg cramping and pains? Could it be the mestinon? Is Prednisone worth adding or would staying off it be better? I worry about weight gain and dread seeing if Prednisone packs it on me worse... I lost a grandmother in her early 50s due to heart attack. But this isn't really acceptable... Way too much pain. Any thoughts??
I take cyclosporine instead of prednisone . I didnt get the weight gain, but I had significant hair thinning for the first few months. That has slowed down.
Good luck to you,
Cyndi
sorry to hear your troulbes with the laberinth of mg, this isproblem that all of us have gone thru and are going thru, but they are solutions that can help. witout the intake of more meds.
with mg, our neurostranmitters do not work as they should, thus causing our muscles to loos strenght and mass, as well pain, cramping ect.
i am 80 yrs, old whent trhu hell couple of times, but allways found the way to minimize my problems.
theyr is a TENSIL HAND MACHINE, that can be used for these problems and it works, i have used it every ttime for about 15minutes per happening, and afterwars i felt like a new baby envigoreted and ready to take a long walk slow to brisk.
this machine cost about $30.00 to $80.00 in any drug store., tey are no side effects and the benefit is great
best of luck
Andre
sorry i forgot to mentione since you say you stend in cement for long time, you should use shoes or sneaker with a good base that you be able to endure standing, maybe a doctor scholl product
Good luck Andre
Mestinon, especially at high doses, gave me very bad leg and foot cramps at night. I did a lot of stretching to try to prevent them.
Most folks can't get by on mestinon only. It helps with the symptoms but does nothing to stop the progression of MG. Some folks do get by on just mestinon, but most of us have to take some kind of immune system suppressing medication.
Prednisone is usually first, as it is cheap, effective and faster acting than most of the alternatives. So we start with prednisone, get our symptoms under control (most of us can with enough prednisone). We then taper prednisone to as low as we can go and have it still work, a slow process to do. At the same time we may start an alternative like Cellcept or several others.
I found prednisone worked well to get rid of my MG problems. Prednisone has its own problems, especially early on when we have to take high doses (I took 60mg per day). At lower doses one can take it long term and get by. My mother took about 10-12 mg per day for 25 years and lived to be an active 92 before dying from a heart attack. With the prednisone she had a decent life; without it her polymyalgia rheumatica was unbearable.
Most folks with MG can do much better than you appear to be doing if the get onto immune system suppression. I went from in the hospital having difficulty breathing to feeling almost normal in about 5 months with prednisone treatment. Then, knowing I could beat MG problems, I worked my way down on prednisone to find the lowest effective dose. Eventually I went into remission and didn't have to take any MG medicine and for 6 years MG has stayed away. The prednisone made the time I did have MG bearable and then actually fully functional. I figure if MG returns I will hit it hard with prednisone to get functional then worry about what long term medication I will take.
By the way, I didn't like 120 doses of Mestinon--made me feel overdosed, so I just took 60 mg every few hours when I needed to be active and not much the rest of the time. Then I quit at about 6 pm to try to avoid the nightime cramps. They were terrible.
Good Luck
Russ
All that said, we do need Mestinon to cater for the day to day variations we experience. I suspect that your doctor is correct, the time has come to address the problem at source, that invariably means using Prednisone short-term whilst introducing one of the steroid-sparing medications for long term care.
Not so sure that standing in cement for long periods can possibly help, no matter the shoes you wear - at least not if the tide comes in - after the cement has set!
Good Luck
Russ