Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 04-08-2019, 11:24 AM #1
nikos nikos is offline
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Default getting discouraged

I am really getting tired of putting on the happy face --I feel that I should be exercising but my legs feel weak and hurt. I have been diagnosed with ocular MG, high blood pressure, low thyroid, high cholesterol - all medicated and doing OK - I have had to give up taking statins as they seem to make the weakness worse - I am very careful with diet to help with the cholesterol - guess I should be talking to my doctor about these thoughts. I guess my main question is how much to all of you exercise - weights ?? walking ?? any suggestions?
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Old 04-10-2019, 02:00 PM #2
winic1 winic1 is offline
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Trying for a formal exercise program may just be too much. If you are exhausting your muscles to where you are weak and in pain, that's too much. I just do what I can, when I can. Take the dog for a leisurely walk (he likes to sniff every blade of grass on the way anyway). Sit in a comfy chair and do the arm movements of the Tai Chi I used to know (a little) for just a few minutes, so I don't get to the over exhausted stage. Lots of little bits work much better for me than any extended or intense activity.

If your MG is affecting your leg and body muscles, then exercising isn't going to fix that. It would be like thinking that you can make your car stop running out of gas by driving it more. Nope, when you're out of gas, you're out of gas, and you have to stop driving until you get a refill. When your muscles say "I've had enough now", working them longer won't help, giving them a rest to "refill" will.

Definitely talk with your doctor about what's going on. If your doc comes back with one of those "no pain, no gain" lines, find another doctor. You can't fix MG by just trying harder. You'll need a doctor who understands it and knows how to treat it and work within it.
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Old 08-26-2019, 04:13 PM #3
levisanz levisanz is offline
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I danced professionally for most of my life. After I retired I went back to college and received a Masters Degree in Education with a focus on Dance.

It all changed 3 months ago when I decided to run up 4 flights of stairs only to completely blow out on the third flight. I wasn't winded...my legs just gave out.

After many different specialists, and months later I learned that I had MG.

Today, my body is like a rechargeable battery. I try to do some gardening, odd jobs around the house and gardening but on some days the charge runs out so much that I have to lay down and recharge.

It's frustrating.
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