myasthenia gravis
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tams644
Posts: 73 Member
was hoping to find somebody who is dealing with myasthenia gravis
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I have MG-- nice to meet you
What type of MG do you have? 1 -
Hi
not sure i just got diagnosed with blood work few weeks ago. I have generalized weakness and my eyes bother me. How are you doing with working out may i ask? really looking forward to getting back on track here its been a long year and half trying to figure out what was wrong with me. 0 -
Well, workouts aren't an option for me at the moment. I had a crisis in Feb, and still haven't recovered fully although I've finally improved to where I can breathe well most days and swallow safely most of the time. Over the past few weeks I've tried a couple yoga classes. I'm still at a point of doing some basic Physical Therapy type exercises to maintain my strength as best I can.
It also took me 18 months of searching to find a diagnosis. I have generalized seronegative MG, diagnosed almost 3 years ago, and have been refractory to treatments. I just underwent 4 weeks of Rituximab infusions, and I'm hoping to see some improvements in the upcoming weeks. It's been a long road, but I'm always amazed on my good days how strong I still am-- there's a lot less deconditioning than I'd expect given how weak I am during the bad spells.
The key to working out with MG is to listen to your body, and stop at the first sign of weakness or fatigue. You have to learn to listen to that little voice at the back of your mind that says "wow, this is hard" and stop to rest. Pushing through won't help and can make things worse. However, as your symptoms stabilize, you'll be able to do more activity. There are many MGers who run marathons, I know 3 who are competitive body builders, and many many more who are able to get back to their every-day lives and activities.
For safety, I'd stay away from free weights, and cardio machines that set the pace for you. For instance, an elliptical machine is safer for us than a treadmill. Body weight exercises are safer than free weights. Working out with someone who 'gets' MG and encourages you to stop when needed, rather than pushing you to keep going, is helpful too. If you are doing free weights, watch your form carefully-- weakness in one area of your body will cause you to change your form, and that's a sign you need to rest.
Oh, and time your workouts for your strongest times of the day, and at the peak effect of your Mestinon dose!3 -
I also have MG and have had it for 45 years. It's very hard for me to do any formal workouts. I walk for exercise0
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HI! I also have MG! I was on prednisone from 2009 to 2016, and just recently weaned off. I am taking other meds instead and they are better for me. Now I can exercise much more than before (still not like a 'normal' person, but better). I am so glad I found this group and hope to get & give motivation here!
Basically, a couple of months after quitting the pred and just by watching my calories, the pounds came 'tumbling down'. Well, the first 20 pounds that is. Now it is going much slower but I just want to get fit again, no matter how long it takes.
Friend me!2 -
I'm back after a 7 month hiatus, and in the interim started Rituximab infusions and was finally stable enough to undergo thymectomy (transternal) in December. Thanks to the rituxin and some pre-op Plasmapheresis, my swallowing and breathing are much better!! I've regained a tremendous amount of weight, up from around 290lb in July to 330+ now. Clearly swallowing better Working on increasing my step counts, and next week I can start upper body strengthening again.
I do best historically with a low-carb diet, but my neuro cautioned me on it because of how tenuous my last year was. He's worried that going too far into ketosis will affect my breathing again, and that the "keto flu" will complicate how we can tell if the thymectomy is helping.
What diets/ eating plans have you guys tried? I'm still on 60mg of prednisone daily, and the cravings do me in!0 -
I just got diagnosed with ocular MG this past week, after 6ish weeks of double vision at night. Seronegative. I've started Mestinon but feel jittery all the time. My doctor said I can go back to working out this week. Went running yesterday and took it slow. Hoping I can lose weight, especially since my doctor said if the Mestinon isn't helping I'll have to start prednisone or azathioprine.0
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I have MG as well, though I am currently in remission following a thymectomy. It anyone wants to friend me, please feel free!0
