NeuroTalk Support Groups - Directed towards plasmapheresis patients

Hello!

My MG symptoms started in June 2009 and I am 37.

I hate how unpredictable MG is. Before MG I was very active outdoors, and now I feel so limited.

The uncouraging thing I have been experiencing is this. I started out with MG spending most of my time in bed, and like you said, about 15 minutes of any activity sent my heart racing and I had to rest. Also, I could not focus my eyes at all to drive or even to walk without running in to things or tripping. Now that I have been taking Mestinon regularly and my eyesight has improved I can drive and walk. I have found that I can do activities that use my strength and can do it for a while, maybe 4 to 6 hours (but not two days in a row). If I try to do something like running, or even walking quickly, or jumping, I get tired so fast...within minutes, and then I have to rest for the rest of the day. So, I have been focusing on doing activities slowly, taking my time. I keep trying to push myself and I know that isn't the best for MG, but I so much love to be active. I have been able to work hard enough to get sore muscles and it has given me a little happiness.

I hope you find out what works for you so you can do what you love again.

Quote:

Originally Posted by tysondouglass (Post 586965)

The plasmapheresis truely is an amazing medical procedure. I felt so much better, even after having my chest split open. I'm getting to the point where I get so tired I can't stand for more than 15 mins. My heart rate jumps and my breathing gets worse. Then I have to lay down. Tho then there are other times when I can run 30 mins. I hate how unpredictable this is.

Tho now I'm just so tired from everything, school, college apps, etc. I don't seem to have the energy for anything, which being an athelete, kills me. I'm torn.

How long have you all had mg? How old are you guys?

Thanks for all the support guys.