I just passed my 11 year anniversary of the date of this muscle disease. Weird date to recall. It was the last time I drove more than one mile. I drove to my father’s birthday which is 45 minutes away. On the way home I realized I could barely push the brake. When I got home I could not move. I was seen shortly after at the Mayo clinic. I had already had 5 years of symptoms and 5 years of being bumped from doctor to doctor not knowing what was wrong. When I finally got to the Mayo clinic we knew 2 things. I was only 34 and had severe osteoporosis and I had hyperparathyroidism and had no idea why. After a muscle biopsy I was diagnosed with Central Core Myopathy, a muscle disease. This muscle disease has cored out mitochondria and is accompanied by the RyR1 genetic mutation. They also discovered my copper level was to high and my ferritin level (Iron storage) was too low.
Fast forward 11 years. I have been in over 3 different genetic studies from the NIH to Canada to England and I do not have the RyR1 mutation that causes Central Core Myopathy.
I have continued to have elevated parathyroid which robs the body of calcium literally destroying my bones.
I have continued to have elevated copper with no answers as to why.
I was treated with an iron infusion for the low ferritin but uh oh they poisoned me accidentally and now I have too high ferritin which causes bone pain and a slew of other symptoms. So I did some blood letting only to become anemic but still have too high ferritin.
So copper and ferritin (heavy metals) too high.
Along the way I was diagnosed with Lyme disease and Multiple chemical sensitivities. My t-fighter cells are shot and so my immune system sucks letting all kinds of viruses to take hold.
4 years of treatment for lyme disease and I am no better than I was 4 years ago.
So I have spent the night looking through 11 years of medical records and come to a conclusion… We have spent over $100,000 in testing. Parathyroid scans, nuclear medicine scans, bone scans, MRI’s, lab after lab, Ct scans. Alternative medicine to every extreme you can imagine. 11 years of medical records I am looking through. A foot tall of paper.
Do you know what Im going to do??
I’m going to burn it all!!!!!!!
No one has a fix. No one has an answer. It is not for lack of my Doctor trying. It is not for lack of me getting into medical studies all over the world.
These papers just show what I’ve been told for 16 years now. “ You are just a mystery.”
That mystery is going up in smoke tomorrow.
If I’m to be saved it will need to be without a drawer being taken up with medical records any longer.
I mean really. Look at this. Don’t YOU want to burn it!!!!!!!!!!