This post will probably be a "To be continued..." post. I am well into the negatives with my spoons right now. However, I wanted to update everyone as soon as possible. So instead of typing for a little bit, saving it, typing more, saving it, and then posting it when I finally finish, I will just post when I type it and then post more later.
I have been diagnosed with mitochondrial disease. Alright, let me know if you have any questions. Talk to you soon.
Ok, just kidding. I'll elaborate. Mitochondrial disease is a rare genetic disorder that affects the mitochondrial in the cells of the body. Since the whole body consists of cells, this disease can affect every organ system in the body. However, there is a wide spectrum of mitochondrial diseases ranging in severity. On one hand, multiple organ systems are involved, symptoms begin at an early age (childhood), and life-span is shortened. On the other hand, someone can have very little symptoms, no adjustment in life-span, and live a normal life. I am somewhere in between. Dr. Shoffner stated that if I take care of myself, this will not have an affect on the length of my life.
However, there is no cure for mitochondrial disease and there really isn't a good treatment. At this time, the treatment consists of CO-Q10, Riboflavin, and L-carnitine. These are all over the counter "medications"/vitamins. On some individuals these things work well to decrease symptoms. On others (most) it does very little, but may help with long term health.
To be continued...
2 comments:
Robin,
Well, I guess it's a bittersweet congratulations. I have many questions as I'm bit concerned that my testing is not going to be inclusive enough. However, I'll wait until the part two post.
I'm glad you have answers. Those of us who have gone through / are in the diagnostic mill know how important that is.
Rest up and I look forward to your next update.
Donna
As always, it's nice to know that there's someone out there who knows how I feel. A lot of my family and friends are finding it hard to believe that my mood has actually improved since my diagnosis. Let me know if you have any questions. I will answer them as best as I can.
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