Mitochondrial Myopathy

[tward]

I am 65 yrs old and I've been diagnosed with Mitochondrial Myopathy for over 5 years. One of the symptoms that really bothers me is driving 2 or more hours. It leaves so exhausted, that it takes a week to 10 days to recover. Is anyone else bothered like this and what do you do about it.
T.

[trutalk]

I was diagnosed with MM 2 years ago now. Before that I was wrongly diagnosed with myathias gravis for 2 years. Both have a lot of similar features. I am only 45 years old and have been suffering from many different symptoms for almost 10 years before I got ANY diagnosis. Before that every doctor I went to just wanted to treat the individual problems I was having without looking into anything further. My vision was the main thing at the time that made the docs look at these diseases. One eye was so droopy it was almost completely closed for almost 5 years before they figured it out. Also the leg pain and numbness I experience is one of the worst things. Driving my car makes me feel totally drained as well as swollen up. After about an hour an half of driving my vision begins to blur and gets weird. I too need quite awhile after a long drive to recouperate. I feel like an old woman with nothing much to look forward to.

Do any of you other sufferers have any acute swelling even after laying down or sleeping? I wake up a few times each night more swollen that when I went to bed-my feet legs and even the trunk of my body swell! Could this be related to heart problems? I am already on meds for edema and high blood pressure but I am pretty certain that I have also had a small heart attack. I didn't go to the doc then because I was honestly too sick to sit in er waiting all day and my next apt with my neuromuscular doc isn't for another 3 months!

Instead of reading more medical jargon, I would appreciate any straight forward experiences any of you have had!

Thanks
trutalk

[paula9002]

Hi. Yes I am bothered by it as well as the accompanying pain and muscle spasms.  The only thing I truly know to do is to just make sure that I allow enough time when I have to do much driving, like going home for a visit, that I can rest before I try to get back in a car. This is supposedly a disease of use and so symptoms get worse the more you try to do since you do not have the energy stores to pick back up like they should.
Do you take any medicine for you MM?