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.

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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.

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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.

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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.

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Comment from: SueW, 25-34 Female (Caregiver) Published: September 08

My niece had a promising career in nursing, when out of the blue started having seizures at 18 years. We have been through the neurological, psychiatric and now metabolic teams, with still no definite answer 12 years on. She has had multiple intensive care admissions through seizures that can't be controlled and is on very high doses of antiepileptic medicines. She has had raised ammonia and now most recently has ataxia, she cannot balance and has painful muscle spasms. I fear for her desperately. We have no diagnosis, she has been told that she has something maybe so rare that it has not been documented. We wear it might be mitochondrial disease. I have sourced a center of excellence for ataxia, and this may be our next port of call. These symptoms are new, we know she has some brain damage due to the seizures, but we feel very alone, without answers.

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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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