Autoimmune Disorders Community
Reflex Neuromuscular Dystrophy
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

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
Tags: rash, virus
Avatar_m_tn
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.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Autoimmune Disorders Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
Top Autoimmune Answerers
1530171_tn?1418143903
Blank
TheLightSeeker
London, ON
434278_tn?1324709825
Blank
karajo
Spearsville, LA
1756321_tn?1377771734
Blank
Red_Star
Queensland, Australia
Avatar_f_tn
Blank
elbamom
westminster, CO
10389859_tn?1409925468
Blank
Foggy2