Thread: Dystonia?
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Old 08-08-2013, 11:07 AM
Stacy_11 Stacy_11 is offline
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Join Date: Aug 2013
Posts: 44
10 yr Member
Stacy_11 Stacy_11 is offline
Junior Member
 
Join Date: Aug 2013
Posts: 44
10 yr Member
Post Dystoni dx

Quote:
Originally Posted by ali12 View Post
HI THERE,
I suffer from RSD but I thought that I would post on here seen as Dystonia is a movement disorder.
I have recently being experiencing severe balance problems, my left leg (which is affected by RSD) shoots out in front of my without me being able to control it, I then fall back. I need my mom or dad to support me whilst walking and I walk with 2 elbow crutches.
My Pain managment doctor says that I suffer from Dystonia and RSD, however he thinks that I am putting the balance problem on - why would I do that???
I also have muscle spasms which I too cannot control (the muscle spasms could be caused by either RSD or dystonia or both), chronic pain (caused by RSD), hypersenstivity (caused by RSD), cramping pain (possibly dystonia), swelling (RSD), colour changes (RSD) and much more.
Does anyone one else suffer from balance problems with dystonia? I am sick of my doctor saying that it is all in my head!
Please reply back if you do
Alison
Hi Alison-

I was dx'd w/ dystonia...after 7-8 years and countless MDs and MRIs. I presented like MS w/an ataxic gait....No one ever mentioned a movement disorder to me, until a visit to a nasty neuro whom said it is either a movement disorder or a conversion disorder.

When I finally saw a movement disorder neuro, I wanted him to see me as I was, so ai came off my meds and went back to the "whacky" gait. He said it was either dystonia or stiff persons syndrome and they weretreated the same.

I experienced something like you are referring to, my left lef would shoot out it something surprised me...it is called a "startle reflex".

FWIW, MOST MDs have no idea what dystonia is. I was going to some of the best medical instituitions in the states and no one mentioned it...I thought I had MS..

PM anytime you want.

HUGS.

Stacy
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