Patient Comments: Mitochondrial Disease - Symptoms

What symptoms do you have of mitochondrial disease?

Comment from: Suzy, 45-54 Female (Patient) Published: November 07

They confirmed that I had a mitochondrial disease only after doing a live muscle biopsy. Myoclonic seizures are no longer considered epilepsy, it seems the medical establishment changed the classification without telling us. So for a number of years I had doctors telling me I was not epileptic when I had been having myoclonic seizures since the day I was born, but suddenly I was healed! I finally figured it out when I looked in my 1983 Tabors and then in my Mom's 1994 Tabors medical dictionary. This article ties everything together for me, the asthma, seizures, and the severe migraines, not to mention the muscle pain and exhaustion. In an odd way this makes me feel better. I'm not sure why, I guess because now my migraines make sense.

Was this comment helpful?Yes
Comment from: MARK F., 45-54 Male (Caregiver) Published: July 24

My husband has shown symptoms of mitochondrial disease since his early twenties, but it took 5 years to get the answer. His condition is multiple mitochondrial deletions POLG 1. He had to retire on ill health in his 30s and I have been his care giver ever since. His wheelchair confined swallowing is sometimes difficult so he is having a peg feed tube soon. He has no fine motor skills and has slurred speech sometimes. His needs are washing, bathing dressing, feeding and toileting. He suffers terribly from fatigue he has uncontrolled muscle spasms which drive him mad, he has tachycardia and high blood pressure, but apart from that he is fine.

Was this comment helpful?Yes
Comment from: Kat01, Female (Patient) Published: April 30

I have recently been diagnosed with mitochondrial disease. I have fibromyalgia and gave the constant fatigue symptoms pertaining to that. But lately, things have been feeling much different. I am much more fatigued. I have much more wide pain in my body. I also have osteoarthritis. Anyway, the last time I saw my specialist I told him how I was feeling. He took 6 vials of blood, and then I saw my primary care physician. He took four more vials of blood. A week later, my results came back positive for mitochondrial disease. I am devastated, frightened, and don't know what to expect. I also get migraines followed by a rash on my face and chest. I go and see the gastroenterologist next month. I have also recently had chest pain, and difficulty breathing. I have asthma, but it has intensified greatly. Now I wait to see yet another doctor and then await his/her results. In the meantime, I just suffer.

Was this comment helpful?Yes
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: Cat, 35-44 Female (Patient) Published: September 14

My aunt had mitochondrial disease and she died a few days ago. I am waiting on being tested for this. I have had years of migraine, arm aches, and neck pain, and walking upstairs my legs ache. I have been to so many doctors and neurologists who said I have carpel tunnel. I am really frightened of my future if mitochondrial disease is the cause. I am 41.

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.

Health Solutions From Our Sponsors