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Is dystonia always so severe?

In past my son has had a case of torticollis which sounds very much like what has been described here as dystonia.  Had been placed on new drug but cannot remember what it was.  My concern now is since that time he has had the "I wanna get out of here, pacing" syndrome with several of the meds he has been on and suffers from restless leg like symptoms when he sleeps.  Benedryl helps both his mood and symptoms.  He is on several psychiatric drugs and they have just started him on Navane.  The jerking legs in his sleep is worse. He has never been sent for a full and through physiological exam before psychiatric meds were started.

Please send your replies because after six years of psychiatrists not paying attention to the fact he had severe asthma etc as a child these discussions are concerning me.
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695759 tn?1227831993
you must be so worried about your son and what is going on. there is nothing worse than a child (not sure of his age so maybe adult/child) going through trauma. I have cervical dystonia or spasmodic torticollis and have done so for around 10 yrs now. I too get what is called restless leg syndrome and sometimes its bad and others not so bad. dont know if its related to the spasms in my neck but I also seem to have spasms in other parts of my body too. I have been diagnosed with msa now and the torticollis is a symptom that can be from that disease. like cmf3225 I too would see a neuro who specialises in movement disorders. I finally did a couple of years ago and I am on a few medications but mostly for pain and to ease spasms. the main treatment I get is botox injections every 3mths. without this I would be unable to function at all. the msa doesnt help but thank goodness for the botox which is injected into the affected muscles. I am due to have my next lot next week. I dont like injections but tolerate them as I know they do help. maybe not 100 percent but a lot. I hope this helps. buttons8
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Avatar universal
I have had spasmodis torticollis for over thirty years and I know there are a lot of different symptoms associated with this disease.I would suggest that you get your son evaluated by a neurologist who specializes in movement disorders.Also you may want to have your son checked out by an autoimmune specialist regarding the asthma.ST is a real disease,it isn't psychological.There are couple of organizations that you may want to contact regarding your son's ST,the Dystonia Medical Research Foundation and We Move,may be able to provide you some info on ST and treatment.Care4Dystonia may also be able to do the same.I think there may be some link between asthma and ST.Please consult a qualifiied professional on this.You may also want to consider a neuropschiatrist.

                                                                          Have a great day,
                                                                          cmf3225
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