Unfortunaly i have Ryr-1 dominant recessive myopathy and it starts with legs unable to walk and I muscle spasms throughout the entire body 24/7. In our country unfortunaly medicine not gives any medicine for that
@samuelcolt2600
4 жыл бұрын
I have CCD and this is no joke I wouldn’t wish this disease on anyone, at 26 I feel some days like I’m 260 this gene mutation is serious and very uncommon or atleast so I’m told.
@Daariencollingridge
3 жыл бұрын
Did ryr1 get worse as you got older
@samuelcolt2600
3 жыл бұрын
@@Daariencollingridge very much so, im now 27 and walking with a cane most days, i am also the 5th generation in my family to have it, at this point i am looking for any experimental treatments available. ive lost so many talents that were leading me in a great direction because of this disease.
@Daariencollingridge
3 жыл бұрын
At first I was diagnosed with congenital muscular dystrophy then year's later they found that they Misdiagnosed me, then they diagnosed me with RYR1 myopothoy. Can it be caused by scoliosis. Also I hope you can get the help you need ☺
@Daariencollingridge
3 жыл бұрын
Did the RYR1 disease get worse overtime or was is as bad when you were younger.
@samuelcolt2600
3 жыл бұрын
@@Daariencollingridge I can’t say wether or not about the scoliosis thing. I had a genetic test done to make sure it was a gene mutation. Unfortunately it was, I am unsure how I knew but I knew at a very young age and it didn’t really hit me until I was about 23 or so, essentially it just got progressively worse over time and it’s on a rapid road as it is right now. I’m getting help but there is just not much help for it other than a pain regiment and injections for my back, other than that I’m pretty alone with it all. But thank you I hope you get the help you need as well.
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