Patient Comments: Mitochondrial Disease - Symptoms

What symptoms do you have of mitochondrial disease?

Comment from: Wendi, 55-64 Female (Patient) Published: March 06

I have always been unable to do what other kids did, for as long as I can remember. I hated gym because I could not keep up, and running or walking was so difficult. Now, at age 59, it is worse, but I do have bad days and good days. Some days I can walk farther than others, but going up any incline is deadly and stairs are just horrible! People have called me lazy and I just need to exercise more, but that doesn't work because it is so painful. I have been to so many doctors and no one could figure it out. But after finding a site on this disease I am sure that is what I have. I have so many of the symptoms. Trouble is, that testing is not 100% sure, and it's not covered by my insurance. So I go about my day, and when I get tired or my muscles hurt I just stop and take it easy until I can go on again. The muscles in my legs can hurt, some days, just walking across the house. Now, even when I was my hair in the shower, the muscles in my arms hurt. No one would believe me when I said my legs hurt, but now I feel vindicated.

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Comment from: moni, 45-54 Female (Patient) Published: February 04

I have been to so many doctors with weakness,s and a seizure disorder. Nothing shows up on EEG. The only thing I have is the muscle biopsy and high ck levels. I'm getting more fatigued and am in a lot of muscle pain in my legs. I need a doctor who specializes in mitochondrial diseases.

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Comment from: CCUK, 55-64 Female (Patient) Published: October 17

Palpitations, easily tired, "clicky" heart when sounded by specialists and chest ache from time to time, but not what you'd call real pain at the moment. Based on previous experience, it's not a good idea to join a gym.

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Comment from: Badger55, 25-34 Male (Patient) Published: September 27

I had muscle soreness/stiffness for several years. In 2004, while throwing horseshoes with my neighbor, I became short of breath and had extreme difficulty breathing. My wife took me to the E.R. where they checked my CK level which was at 9,000. I had 3 muscle biopsies, which the last one revealed ragged red fibers in the tissue sample they collected. The previous two showed abdormalities though they were not spefic enough to diagnose with anything. I find my legs, shoulders, and arms are currently most affected along with severe fatigue with little physical activity. Currently I find my strength and endurance declining and I endure migrane headaches often and a "normal" headache about every other day or so.

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Comment from: moni, Female Published: December 12

Even though I never felt right most of my life, unusually fatigued, never could run, wake up unable to motivate. When I got in my twenties I would go to doctors all the time telling them something was not right, but I was never understood or they thought I was a hypochondriac. It wasn't until I started having more muscle weakness and some pain fell and broke my foot, then the onset of some kind of seizure disorder they finally did a muscle biopsy that's when I found out I was 48 years old by then, I really wish doctors would have listen to me, when I was in my twenties and thirties, by the time I reached my forties I have given up.

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Comment from: MaryEllen, 65-74 Female (Caregiver) Published: February 28

My mother-in-law has had chronic bronchitis for years. She is constantly getting the flu and colds. She is a cancer patient and has been cancer free (breast cancer resulting in the loss of one breast and lymph nodes) taking tamoxifin for 8 years and recently switched her drug to the new one instead of tamoxifin. She has beeen quite ill with what she thought was the flu. She had several rounds of antibiotics and did not improve. She was recently diagnosed with a mitochondrial bacterial infection. She was given prednisone and also a different antibiotic. I thought there was no cure for mitochondrial changes and that this diagnoses was not explained to her very well.

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Mitochondrial Disease - Treatment Question: What kinds of treatment, therapy, or medication have you received for mitochondrial disease?
Mitochondrial Disease - Prognosis Question: What is the prognosis for your mitochondrial disease?

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