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...
Good Afternoon Folks. I was wondering if any of my fellow MG sufferes, have expierenced weakness in different parts of their body or general weakness after over exertion of, as an example, their eyes after reading for an extended period of time, or mouth and tongue eating semi coarse food. But in the alternative this activity seemed to effect the strength in my my legs, hands or arms. Any observations about this would be appreciated. Thank you.
When my symptoms first raised their ugly heads, only a couple of years ago, my eye muscles were hit first, followed by double vision. (One of my eye muscles is not getting good signal from the nerve.) Hence, it gets less strong causing that nerve/muscle to relax - double vision. I still have mild double vision that is not stable, so Prism glasses do not work for me, but learned how to work with the problem and recently got my driver's license back again.
I too deal with many of the things you listed above -
For me, I am always fatigued. It takes a lot of effort to do physical things. And when I do do something physical I start to perspire, then my heart starts to beat faster while I become weaker and weaker and becomes harder to breathe.
Today, my wife and I walked through the mall, with our KF95 masks, It wasn't long before I started to sweat and was looking for places to sit down. I did need to rest on occasion.
I think, I only have so much energy - say 25%. My body does not seem to produce Acetylcholine beyond it's current production level. When I exercise, my body uses some of those chemicals, thereby robbing them from other areas of my body. making me weaker sooner. Sometimes in different parts of my body like my jaw when I am eating. Or stuttering/slurring my words. Or hand tremors and sometimes cramps. It's kind of like a balance. Finding treatments that do the least negative stuff to me ,while I try to build my strength or try to minimize the loss of it.
I do not wish to say that what you are experiencing is normal or not. As my normal is now trying to live the best life I can with what I've got.
Scott
All the best to you. Keep fighting the fight.
i beleive that all of us have gone or going thru these experiences,there is no escape from it, but i found years ago that a simple way to counter that fatigue and other problems is simpy by taken a break and try to relax maybe a bit if sleep will help, those are the things that i have used and seems to have worked for me
the importance to reach better control is the 3 steeps
1 full control of emotions and stress, as these things are the most dangerous to us
1 stops activities when one feels tired and take a break even a nap, it will work miracles
i have used those metods and ver satisfactory, there isnt much more that can accomplish what those steps do, take it from a old guy whom cares about haven a lesser bad life do to mg
best of luck
Andre
My MG started with the double vision and eyelid droop, then to my head where eating, talking and even holding my head up got tired, then to all of my body and breathing issues.
When I was first diagnosed, the doctor did muscle strength tests and although I didn't know it, he saw it clearly. One of the tests was he and I gripped hands and pulled back against each other. I could hold my own for maybe 5-10 seconds and then my muscles gave way and he could pull much harder. I hadn't even noticed that my strength was just short bursts before giving way.
I took lots of mestinon at first -- 6-8 pill a day and then in a few months high doese of prednisone got rid of the symptoms and I felt stronger than I had for years. I suppose i had MG at a low level for a long time as I had breathing issues for years that went away with MG trreatment.
Good Luck
Russ
Eyes for sure and in the beginning, I felt a new weakness daily. I remember feeling sorry for my husband because I had a new ache or pain or weakness every day. I was so glad to find this website so I could get support to relieve the poor guy. Crazy disease. It has been 10 years now and nothing surprises me anymore. Well I shouldn't say anything because it still at times throws me a curve ball. I think the hardest part is I can't depend on myself. Somedays I just can't keep up. Other days I can do anything. I felt sorry for my son the other day. He asked if I could drive somewhere, and I said yes I have been normal lately. Poor kid....what the heck is normal????