Post by peacewillcome on May 6, 2014 19:40:13 GMT -8
Hi to everyone. I am new here and have neuro issues that mean i face many challenges like a sci person. Is this the forum for me? Anyone here with a movement disorder or dystonia? I have a lot of nerve pain, neurogenic bowel and bladder as well. Cheers
Post by willingtocope on May 19, 2014 7:18:36 GMT -8
I was dx'd with dystonia in my neck about 15 years ago. Under stress, my head would wobble from side to side, like I was saying "no". I've been taking clonazepam ever since which controls the wobble pretty well. Then 5 years ago, I was dx'd with multiple sclerosis. I suspect these may be related.
I was dx'd with dystonia in my neck about 15 years ago. Under stress, my head would wobble from side to side, like I was saying "no". I've been taking clonazepam ever since which controls the wobble pretty well. Then 5 years ago, I was dx'd with multiple sclerosis. I suspect these may be related.
Did you develop any other movement disorders as well? How much clonazepam do you take? Thanks
I've had familial tremor since birth (mother and a couple siblings have it also).
Before dx'd with MS, I was taking 3mg clonazepam / twice daily. Since I've been on it so long, its probably lost its effectiveness. I've weaned myself down to 1mg per day. The dystonia HAS NOT returned.
Post by peacewillcome on May 22, 2014 11:44:03 GMT -8
Thanks so much for replying. Sorry for the ms dx. I also have another underlying condition that gives me ms like symptoms but now have developed quite severe spasming in face neck and shoulder and many involuntary movements since a car accident where i comprssed nerves in my neck and suffered whiplash to an already fragile neck amd jaw. my bite was off after the accident, Dyskinesia is a major problem as well as chorea. I am being treated with botox for the spasming with some success. I am still in the dx process. It gives me hope to think perhaps the dystonia could disappear. Some of the movement episodes i have are almost like an epileptic seizure. Prior to the car accident i could walk with a walker but now am in a chair most of the time. I can walk a little but not stand, i can not walk and talk at the same time. Its all very bizarre. Its nice to even meet someone who knows what dystonia is.
Post by willingtocope on May 22, 2014 15:11:34 GMT -8
Actually, when the dystonia first appeared was about 20 years ago...high stress job. At the time, the neurologist I was seeing said it was probably due to damage I had done my neck maybe 25 years before that (jumped off a moving train...didn't do the "tuck and roll" thing right). Nothing broken, but an extreme sprain.
Anyway, clonazepam controls it.
Just as a side comment, you might want to look at www.cpnhelp.com I suggest this because when I first developed my current symptoms around 8 years, I visited many different neurologists before the Mayo said MS. All of them diagnosed me according to their specialty. One of them suggested I had dyskinesia.