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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. Amanda Cameron

    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. Amanda Cameron

    My email is anc19@live.com.

  3. Diane McLellan

    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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