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Reflex Neuromuscular Dystrophy
My 15 yr old was dxd with RND.  I feel like this is a "catch all" dx she was put into.  I feel like we are living an
episode of mystery diagnosis!   Where do we go when the "specialist" assumes symptoms are all psychologically related?  When she gets a virus, her joints hurt, they are red and swollen.  She wakes up at night screaming in pain, with a fever when this happens.  Her hands and feet turn red and hot or blue and cold.  She gets angry bright pink/red rashes that radiate heat for no apparent reason. These are usually symmetrical and bilateral.   According to the RND dx, everytime she gets a virus and has the pain, she will have to do the "intensive exercising" treatment all over again.  Can anyone point us in the right direction?  Thanks
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When i was eleven, i woke up with dead cold legs and i couldn't feel them. They thought that i just had a stroke so they sent me home from children's hospital. It went away for a while until i started getting high fevers and my left leg turned blue. I was re-admitted to children's hospital. The doctors did not believe me when I said i could not feel my left leg. They tried pricking it with needles, shocked it, and put me through three MRI's. They still thought i was faking, so my mother took me out of the hospital and found me a doctor that actually diagnosed me. I have RND and any STRESS caused to me i get fevers, any PAIN i feel my leg goes numb or a pain goes through my whole body. It makes it harder to play volleyball, softball, and do cheer leading. SHE DOES NEED TO EXERCISE BUT NOT ONLY THAT. She needs to mentally overcome this too. The doctors think that it is a physical issue so they will tell her to exercise, but what she really needs (and this helped me) is to go to a therapist. I know your daughter is probably older now, but a word of warning, if her kids are to have RND too they will show signs with abnormally painful leg cramps. That's what started mine.
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