After many months of waiting, I finally received a diagnosis (hopefully the right one this time!) today. The verdict? Congenital Myopathy. Apparently, I have had some of this since birth, or maybe even before. There are several variations of this, but most insurances will not cover more specific tests unless one plans to have children.
I can remember being the smallest, weakest, and most uncoordinated child on the playground. But, I was able to march in the band when I got older. I did some swimming and aerobics when I was in my 20s and 30s, but I was never able to keep up with others in the class. By my 40s I had multiple other problems (ruptured discs, asthma, sleep apnea, severe anemia) that cropped up and apparently exacerbated the problems I already had.
This is one of those bad news/good news things. The bad news is that there is no cure for this. Muscle abnormality is muscle abnormality. The good news is that it is relatively non-progressive. There is something called Coenzyme Q10 that may help a bit and I have been given permission to do some gentle stretching. Stimulants may help the severe fatigue if my heart checks out OK. I am continuing my more mindful eating and less of me to move around would certainly help.
For the most part, my fears have been relieved. I am not on a path to become completely helpless or a burden to my loved ones. I just keep on keeping on, doing the best I can with what I have to work with.
And I don't think that is too shabby.
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2 comments:
If you had been properly diagnosed as a child, would anything have changed in your life? I am so grateful to God that you should not get worse.
Cherie, it would not have made a difference. There are no cures for these diseases. The only thing that might have made me feel better is to know that I had a reason for being a klutz and so weak.
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