Read all about my journey from wrong to right diagnosis on my blog
My health blog has been honored several times over the years as a top Parkinson’s blog. Parkinson’s was my first movement disorder diagnosis. That diagnosis came after years of going to doctors. Basically they told me my problems were all in my head. Then, when I began to jerk uncontrollably, they changed my diagnosis to Essential Myoclonus. But after about a year I stopped jerking and became so weak I could hardly walk. My doctors ordered all kinds of tests. And I took lots of medicines that did not work or made me worse. I was finally diagnosed with Mitochondrial Myopathy.
Mitochondrial Diseases are cellular diseases that are actually hereditary. They can’t be “caught”. These diseases are passed down through the mother’s side of the family. Only the females can pass this type of disease along. Males can suffer with symptoms, but they can’t pass it along to their children.
Early Onset MITO
When the inherited mitochondrial damage is severe, the life expectancy of babies and children is limited. And the disease can present in all kinds of cells and tissues. It depends on where the damaged mitochondria from the mother end up in tissues, as the cells split during the very beginnings of the baby.
Adult Onset MITO
I’m one of the lucky ones. My symptoms didn’t affect my quality of life until I was older. All adults have had a lifetime of exposure to toxins from foods, the environment, and even from medicines. This damages more and more mitochondria over time. That’s part of why we age. But I was born with some already damaged mitochondria in my cells. So over time, mysterious symptoms began to appear, as more and more mitochondria were damaged. Those damages occurred just by living a fairly normal lifestyle.
Living Energizer Bunnies
The mitochondria of the cells create the energy the different parts of the body need to function. So my poor energy production caused most of my obvious symptoms. My symptoms show up as digestive problems, trouble staying warm, fatigue, and muscle problems.
In my Day by Day with a Movement Disorder blog I journal about the emotional and physical issues I’ve dealt with over the years. I originally started this blog because I so desperately needed to hear from other people dealing with similar problems. But I found very few people writing about anything similar to my problems way back then. So, I wrote not only for myself, but for others who might benefit from reading about my journey.
I’m sorry if you, too, are reading this blog because you have lots of puzzling symptoms like I have. Hopefully I have written something in these pages will be of help to you.