Patient Comments: Mitochondrial Disease - Symptoms

What symptoms do you have of mitochondrial disease?

Comment from: 55-64 Female (Patient) Published: February 18

After having my hips replaced in 2005 I found I was short of breath. It took over a year to get the diagnosis and a ton of tests. Now I realize its mitochondrial disease. I have always been fairly active, but I have found that lately I do not tolerate exercise as well, feel more fatigued, and recently I have been getting migraines once a month or so and I have nearly chronic pain in my abdomen. In the last few months I have also noticed I am getting more short of breath. Twice a day I take vitamin C, B1, B2, CoQ10, creatine and some sort of an amino acid supplement. I have also noticed that my eyesight is worse and I can no longer watch TV or drive without my glasses.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

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?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.


Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.


STAY INFORMED

Get the Latest health and medical information delivered direct to your inbox!