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Taking it one nap at a time!

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Latest journal entry

Final Test Results

I finally received the remaining results of my muscle biopsy. A four week estimated turn around ended up being an eight week wait. Unfortunately, the results confirmed that I do have mitochondrial disease. In fact, I have two mitochondrial disorders.

For my nursing friends, it’s called:

1. Complex II-III deficiency of succinate cytochrome c reductase
2. Complex IV deficiency of cytochrome c oxidase

Remember the mitochondrial respiratory chain?! I still don’t fully understand it. 

For my “layperson” friends, my diagnosis is: Mixed Mitochondrial Respiratory Chain Disorder which has caused Mitochondrial Myopathy. 

The lab was still unable to determine why my mitochondria decided to go on strike.

The specialist in Seattle “declines” to see me as he “has nothing further to offer.” That’s super helpful….. So, as I mentioned early on, this is typically a progressive, degenerative disease with no treatment or cure. I remain on several supplements that help my body to process energy but they only help so much.

I'll be looking further into some eastern medicine and essential oils. I do have contact info for a clinical trial out of UCLA. I plan to send them an email today. I may go to Mayo Clinic or another specialty center in the near future.

For now I plan to treasure time with my family and friends. I’ve always felt there was never enough time to do that with my busy work schedule. I guess being unable to work does have some benefits!

Thanks again for all your love and prayers! I’ll try to update this post monthly.