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Mitochondrial myopathy. Have pharyngeal Dysphagia, hip bursitis. Taking vitamins. Muscle sample needed?

Hello, I am a 21 yr old female in the US. I have mitochondrial myopathy (cytopathy) complex 3 and it is causing all kinds of problems. I have Pharyngeal Dysphagia, hip bursitis/ tendanitis, muscle spasms, episodic diarreah, cyclic vomiting, adhd, high anxiety, insomnia, and a great level of fatigue. I also have scapular winging present and feel like my body is slowly wasting away. I'm only 21! I am on alot of vitamins and about to start physical therapy. Is there anything else that I can do? I am on health insurance through the state and having a hassel keeping it because I never had a muscle biopsy, just very specific lab and urine work ups done and WAS diagnosed however it doesnt seem to appease the powers to be. It can take multiple times to get a muscle sample that shows the disease, should I request it so I can get better medical until I can go back to work? What are the pros and cons of treatment (if any) and biopsy?
Asked On : Tue, 2 Apr 2013
Answers:  1 Views:  103
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Pediatrician 's  Response
thanks for giving opportunity to share your problem and suggesting some solution.
for confirming the diagnosis of mitochondrial myopathy muscle biopsy is a must in addition to lab investigations.
i am sorry to say there is nothing like cure for this disease. only symptomatic therapy to relieve your pain and distress
better make up your mind to live with this disease
hope this answer will help
take care
Dr MV Subrahmanyam MD;DCH
Answered: Fri, 12 Jul 2013
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