11-16-2007, 10:48 AM
My name is Alison, I am a twelve year old girl and I live in the UK (England)
I have just being diagnosed with Dystonia in my left leg as well as Reflex Symapthetic Dystrophy (RSD)
I was wondering whether anyone could tell me was Dystonia is.
12-16-2007, 01:35 AM
Hi Ali -
Dystonia is a type of inappropriate muscle contraction. For most people, it's shown by an uncomfortable (RLS-like, heck, you could say that RLS itself is a dystonia!) sensation in the affected limb(s), and sometimes can be outright painful. In some cases, left untreated, it can cause contracture, which where a limb assumes an inappropriate position (in a more permanent fashion).
I have mild generalized dystonia and more severe dystonia in my legs, which is worst in my calf muscles. I had an initial movement evaluation by a neurologist this past summer, and he discovered my dystonia issue whilst attempting to bend my left leg a certain direction (unfortunately he discovered it due to the fact that the maneuver was so uncomfortable that I reflexively kicked him). My dystonia, kicking notwithstanding, gets better with activity, and I found that the drug Mirapex (pramipexole) has worked wonders. There is another drug, ReQuip (ropinirole) that acts similarly.
Also, about reflex sympathetic dystrophy... I'm looking up more on that. My doctors have started considering that as relevant in my issues. Apparently it's a major cause of dystonia and any other nerve dysfunction you could think about. (We have decided that mine would have been caused by some sort of infection, namely since I have other clear signs of infection elsewhere.)
Hope I was of help. If you have any other questions, feel free to reply back and/or PM.
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