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Anne’s Fight Like a Girl Story (Mitochondrial Disease)

Anne's Story (Mitochondrial Disease)Looking back my symptoms were coming on slowly. But after I became ill with mononucleosis at the age of 40, I’ve never recovered. After several years of no real answers from my family practitioner or neurologist, I made myself an appointment at the Mayo Clinic in Minnesota.

There through a random blood test, a rare genetic disease called Glutaric Acidemia Type 2 was discovered. My life as I knew it has ended. I went from being supermom, to someone who lays on the couch most days. If I do have to go somewhere, I rest up ahead of time, and will definitely need time after to recuperate. I’m now 47. I have a cardiologist, a gastroenterologist, a neurologist, and an endocrinologist on my “team.”

My future is unknown…this is a fairly new found disorder and they are learning more every day. I would like to say that my family practitioner first told me I had “fibromyalgia,” which I believe is a misused diagnosis when doctors really don’t know what’s wrong with you. I encourage others to reach out to specialists, don’t necessarily accept one doctor’s opinion on what’s wrong with you. Whew, I need a nap now….

Anne
Oklahoma
Submitted 08/28/2013

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

3 comments

  1. Hello,

    I am a student at the University of Georgia and I also have mitochondrial disease. I realize this was posted a few months ago, but I wanted to reach out. I work for an organization called the Foundation of Mitochondrial Medicine. The organization I work for is looking to reach out to people and organizations to raise awareness to diseases like mitochondrial and related diseases.

    I emphasize with your situation as I experienced similar feelings with my own form of mitochondrial disease. It took me three years and 13 doctors to get diagnosed. I mostly manage my disease now with diet and exercise. I share your frustration with the lack of knowledge and treatment options for this disease.

    Don’t hesitate to reach out to me!

    Thanks for your time,

    Amanda Cameron

  2. Hi, I just found this site by accident, but wanted to share my similar story with you. I was diagnosed in 2006, at the age of 52, after a muscle biopsy. My symptoms too had been coming on slowly over several years and I attributed them to gaining weight, being out of shape and long hours at work. Looking back I think my symptoms started shortly after I was diagnosed with breast cancer. It took me a long time to accept this disease. I was frustrated, resentful and in denial – more than I was when I was diagnosed with cancer. But, now I have accepted it as “real” and take things one day at a time. I do get frustrated with the dr. appts. between the neurologist, physical medicine & rehab, cardiologist, gastroenterologist, and urologist they keep you busy and I’d much rather spend my time doing something else. But, it is what it is. I don’t know what the future holds, only God does. But, from what I’ve been told I have a pretty good idea. So, everyday I’m thankful I’m doing as well as I am.

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