mitochondrial myopathy

[myopathyblues]

Hi,

     I was just diagnosed with mitochondrial myopathy at 49 years of age.....

My specialist eluded that there would probably be no disability etc...

I am taking 2000mg of Q10 a day...this seems to help some with the muscle burn  (I had off the chart lactic acid readings).

   I know seem to be getting some blurry vision and some body tremors...these have evoled in the last week.

My next apointment is 3 mths and I am worried this may be to long.

Suggestions?

Thanks...

[dancer90]

I am 56 year old female.  Although, I, myself have not been formally diagnosed with Mitochondrial Myopathy, the baby I gave birth to- years ago   did.  He died at age l year old.  I have a serve speech problem, some gait problems, and some tremors too. I am not in any pain.  My family dr. gave me a prescription for the tremors.  I'll see how they work.

[myopathyblues]

Hi Paula,

     Thanks for the Info.....They JUST DIAGNOSED me and are running more tests on my muscle biopsy and such to try to narrow it down.....It all started around last Christmas  (I believe even before but thats when it got bad.)
      It intially started with what they thought was a torn rotators cuff...then within one week I had heart pains and they did a heart cat on me...etc...etc...etc....
     The muscle pain is the worst of it all though...I am veryh active and now I am at best 50% of my former self.
     Ok...enough about me...tell me about your situation.

Take Care,
Keith

[paula9002]

Hi. I am sorry to hear about your diagnosis.  I am not a doctor, I was diagnosed with it over 16 years ago and it was a lifestyle adjustment for me.  Do call your neurologist to go in regarding your vision especially. Also, should you want to get any information about this disease, you can go to www.mda.org/disease/mito   or www.mda.org/publications/mitochondrial_myopathy and there is some pretty good information.  I don't know where you live, but if your doctor did not mention it (my first did not but second did), you should register with MDA. They have a clinic here and see patients on a regular basis to monitor and help where they can. MDA also has many benefits available should you ever find you need them.  
Did they tell you the specific kind you have? what else is affected? how did they find it?
If you ever want to "chat", I will check back for you to be here. Take care and God Bless.