Dystonia (literally, "abnormal muscle tone") is a generic term used to describe a neurological movement disorder involving involuntary, sustained muscle contrac...
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Is this dystonia?
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Hi,
I'm living in the UK so I realise I can't really seek advice on treatment here but I have recently been tentatively diagnosed with dystonia after a visit to accident and emergency (emergency room) and a visit to my rheumatologist who treats me for another chronic condition. My question particularly is whether dystonia comes and goes. I have had two 'episodes' in six weeks. By episodes I mean that I've had severe spasms with twitching and contortions. They have resolved after four or five hours, latterly with a dose of diazepam (valium). I am seeing a neurologist at the end of May. Because of the health system over here I can't request a movement disorder specialist, at least until I've seen the initial neurologist. The A&E doctor and the rheumatologist both said it was a focal dystonia but both times it has affected my eye, jaw, neck and shoulder, contorting my arm into a flexed position. I have read the information available online about dystonia and have been left wondering a) is it focal dystonia or some other kind and b) is it dystonia at all? My other chronic condition causes spasms but this is completely different - like out of control spasms with twitching and contortion as well. I'd be glad of any input anyone can give me. Posted on 04/21/08, 05:04 am |
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hi naama, im from the uk & i have similar symptoms, i have spasmodic torti collis, mine like yours can be bad 1 day and ok the next. im on benzo's also, ive been shoved from pillar to post. it doesn't seem to be recognized in the uk, like it does in the states. i had to wait 9 months to see a neaurologist who just put me on diazapam. i found that alcohol cureed it, but that gave me cirrhosis? so i wouldn't advise that......... 
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It sounds to me like some kind of Dystonia- I would definitely see a Neurologist, and I question your taking Valium, as it is so habit forming. B.J. Dean (Bette is my real name- you might go to the dystonia-foundation.org site and see if you can find anything there.)
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Dystonia is a type of nerve damage pain, you may be interested in joining the neuropathy group. Look for topics that have "autonomic" in the subject line.
I think that this site will help you with resources and links, but how others have dealt with similar issues. The site also has over 80 picture / images to help you better understand, in addition, we are well over 300 members now! Thought we could help.. http://dailystrength.org/groups/ne...
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Im from the uk as well. I had to go through all the other departments in the nhs before i finally saw a Neurologist. i was diagnosed cervical dystonia. Be caredfull about taking valium or other drugs. The drug treatment does seem to be very hit and miss through out the country. I have joined the uk dystonia society. they have been fantastic they have the latest up to date information on all things concerning dystonia.They also produce a very good news letter every 3 months if you become a member. Hope this helps. www.dystonia.org.uk
Helpline: 0845 458 6322
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Dystonia is a movement disorder that causes your muscles to contract without your control. This can cause twisting or jerking repetitive movements or abnormal and uncomfortable positions or postures. Dystonia may affect any body part, any area of the body, half of the body, or the entire body. In most people with dystonia, the cause is not known. Several forms of dystonia, including one called DYT1, are due to a change in a gene. These forms can be passed from parent to child. Some cases of dystonia are caused by exposure to toxins or poisons or to certain prescription medicines used to treat psychiatric disorders.
There are many forms of dystonia
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