mitochondrial myopathy

First time for me to write on one of these sites I was just told I have mitochondrial myopathy not real sure what or how to take it main complaint is pain and burning sensation.  And I use to think that when I get short of breath its cause either I am out of shape or because I smoke, I also see a cardiologist for heart palpitations, I also get dry mouth not sure what that means and occasional heartburn can anyone tell me if any of this is related to mitochondrial myopathy

[Kot1972]

Hi, one can have a lot of seemingly unrelated symptoms with a mitochondrial disease. You may want to look at the information at the website of the United Mitochondrial Disease Foundation www.umdf.org. There is also a separate forum on the MedHelp on the mitochondrial disorders. Good luck!

[Dr Sharma]

Hi there. Mitochondrial myopathies are a group of neuromuscular diseases caused by damage to the mitochondria, the power plants of our cells. Since nerve cells and muscles require the most energy thus are most damaged. Few symptoms are exercise tolerance, heart failure or rhythm disturbances, dementia, movement disorders, deafness, blindness, droopy eyelids, vomiting, seizures etc. during physical activity muscles may become easily fatigued or weak. Nausea, headache and breathlessness are also associations.
The prognosis ranges in severity from progressive weakness to terminal.  Physical therapy may extend the range of movement of muscles. vitamin therapies such like riboflavin, coenzymeQ, and carnitine may give some relief in fatigue and energy levels.
Take care.

[Tina114]

I am waiting to see if my insurance will pay for further testing.. neurologist says it will cost $3,777 makes you wonder why the insurance you pay for may or may not pay for it.. Any way My mitochondrial myopathy seems like its getting worse its affecting my work the pain and burning is the worst its affecting the things i like doing. I love bowling but after awhile my arm and hand start hurting hoping i make it through the 3rd game.. does anyone also know if this disease can cause excessive thirst its driving me nuts it wakes me in the middle of night I also feel like i have to be drinking something all the time like be dehydrated.. My PCP did bloodwork to test my sugar

[Kot1972]

Hi, what kind of testing do they mean? How did they diagnose you in the first place? I have done a lot of mitochondrial testing, some tests can be very expensive and, indeed, not paid by even a very good insurance if your symptoms or previous tests are not strictly suggestive of mitochondrial myopathy. Diabetes mellitus is a very common finding in mito patients, if your blood sugar shows it  - the meds can help you with the thirst. Do you have any weakness in your muscles or exercise intolerance?