Patient Comments: Mitochondrial Disease - Symptoms

What symptoms do you have of mitochondrial disease?

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: SherrieM, 55-64 Female (Patient) Published: August 07

I was diagnosed with fibromyalgia about 18 years ago. I have always thought there was more going on as I experience unrelenting fatigue and exercise intolerance. I feel like my legs will not hold me up much longer. When I try to exercise, my symptoms are then worse. I cannot get my doctors to understand the severity of how the symptoms affect my life. I think this is perhaps a mitochondrial disorder.

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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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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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