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 ali12,
Many doctor's are unfamiliar with movement disorders and some have never heard of dystonia. My wife had a doctor who reported that it was pyscho-somatic - "all in her head", it isn't and balance can be an issue. My wife suffers with dystonia (which took 18 mths for a neuroloigist to define) after she had an attack in his office. But she does suffer form unsteady balane and a couple of days ago while we were shopping she was quite tired and she found she couldn't walk where she wanted to go and involuntarily walked off to one side instead of straight ahead. So, it is NOT in your head and we only found specialist knowledge after going to a neurologist who specialised in Movement Disorders. Not all do and the one's that don't are not worth your time. We understand your frustration.

Best to you, ianacoustic.

By the way my wife's case, there is no family history etc of dystonia and as a result of a car accident, it has been attributed to "post accident TRAUMA. I see you sprained your ankle, i don't know how bad that was, but if there is no family history start looking on the net for trauma induced dystonia - it does exist! :-)

" start looking on the net for trauma induced dystonia - it does exist!"

My Dystonia reared its awful head a few years after suffernin' a severe head/brain trauma. It was diagnosed by a neurologist who did extensive testing on me to get the proper diagnosis.

Family Physicians do not specialize in neurologic disorders so their focus is the entire body without specialization to one area. I think that is why so many doctors don't know much about "movement disorders" like Dystonia.

I was diagnosed by a neurologist with cervical dystonia. I received 6 shots of botox as first treatment, so far it has not worked. Its a very painful condition in the neck area.

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

Hi, I am Grace. I have dystonia. Can only keep feet still if I lie down. I have cramping and spasmiing . I have problems keeping my tongue still, general neuralgia and a tic. The only thing that I find that works to relieve the symptoms, is to lie down. If you keep your feet up, when sitting, that helps some. Get to a neurologist as soon as you can.

A movement neurologist, that specializes in dystonia and such conditions like ms and parkinsons, is the best approach. I will tell you my journey wasn't an easy diagnosis. My disease also progressed very rapidly, and is clearly in a generalized form, which means basically everywhere, with the neck , shoulders the worst. I also had an injury trigger it... and I went from family doc to neurosurgeon ( cause of a wrecked neck) X2 opinions got fused. Woke up paralyzed, never so scared in my life. I sometimes wonder if that was a reaction to the anethesia and my dystonia. My Neurosurgeon was clueless, and put a lot of self blame on me "why can't you move" , I couldn't even pee at that time, no sensation. Same doc said I would be walking up and moving able to drive myself home.... well no, and I stayed a week, and should have followed up in a rehab facility. Coming home was the hardest thing I have ever did. Back to the dystonia, after my surgery I had increased shaking, lack of movement, and strength, and extreme pain. I went from a rehab doc (also a good recommendation for anyone seriously hurt) called a physiatrist. He was a life saver. Got me to see a neurologist in his office they remained very quiet on what they thought it was until after I was seen by the neurologist. There was some question of Lupus and Ms but got ruled out. Lupus with positive ana reading and Ms with white spot on the brain. I am frustrated on the lack of knowledge of people, I will say it was identified here as permanent disability, as I was clearly unfit to return to work. That in its own self was a big blow.