Dystonia Support Group

Dystonia (literally, "abnormal muscle tone") is a generic term used to describe a neurological movement disorder involving involuntary, sustained muscle contractions. Dystonia may affect muscles throughout the body, in certain parts of the body, or may be confined to particular muscles or muscle groups.

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  • MichaelWhite54

    medical alert system

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    I came to your site in search of a normal medical alert service, my grandmother suffers from dystonia and sometimes falls down, and because of the age it's very hard to get up. I want to know if someone knows about medical alert systems, can they be reassigned so that when you press a button, a call is made not to the hospital, but for example to my number? And how to do it? I have such a model...
  • AlicP1990

    Has medical marijuana helped anyone with Dystonia?

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    I would like to know what can make my life easier with the dystonia.  It keeps on getting better these days, because of how much better I am dealing with my symptoms, thank God.  But, I was just wondering what, if anything, can make my symptoms even better, like medical marijuana?Alic
  • Juls

    New symptoms help

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    I have had dopamine responsive dystonia since I was 17. Now that I am 23 almost 24 i have received new symptoms. I have curling hands and mood swings because My medicaine is waring off. My legs are shaking more to and I am always exasted. Im on two meds and there working well but my fingers are still curling. If they don't stop from the medication then I will have to get aupuncture. I'm scard of...
  • I was diagnosed with Parkinson's disease in 2009.  The Dystonia started about a year ago.  I have it in my left foot and in my neck and face (left side).  Initially I could handle it but then each bout was longer and more painful.  My toes curled under so often and strongly that I ended up with 3 stress fractures on the top of my foot from the pulling.  My neurologist suggested botox...
  • Rbear66

    Hi, Im new

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    I was just diagnosed with dystonia, they didnt say what kind but it seems to effect my neck and jaw mostly although I have spasms everywhere. I have trouble swallowing and I break out in a pouring down sweat whenever it feels like it and my legs are useless , I walk like Im 90 sometimes cause my legs are locked up. Can anyone give me some clues on what to do from here or is it gonna get worse or...
  • kkathleen

    Foot dystonia

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    has anyone else has issues with their walking and inability to relax muscles or your foot turns inward and toes clenched under 
  • Juls

    Dystonia and depression

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    I have dophamine responsive dystonia. I have been struggling with depression since Ive had dystonia. I am having mental health problems right now. What are your depression symptoms like? Do get delusional sometimes? Like your dreams blurr into reality? I do shake more when Im depressed. I take carpadopa-Levodopa. Is anyone on that med and have problems with depression? Also does anyone take the...
  • kkathleen

    Greetings I'm new to the group

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    my name is kerry and I'm 34 with seizures dystonia of my neck and shoulders and my feet.  When my symptoms began four years ago I developed a stutter where I could barely talk for two years. Currently I've just had foot surgery and normal use a cane to walk currently rocking the wheelchair. I know the doctor diagnosis game is hell and I hope I can not only get some understanding and advice of my...
  • Moodyali

    Cannibis Tincture

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    Has anyone had luck getting pain relief with cannibis (marijuana) products? I live in Washington State and can get it easily. My Canadian friend has had great pain relief with no wierd side effects using acannibis tincure (concentrate oil.) If you have had success let me know. Just say it was a long time ago so you won't worry about getting arrested. ;) ;)
  • DYS101

    DBS Surgery

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    I have just joined this group and I'm not really sure how I found it.  It's been nearly two years ago that I began having issues with my eyes, it continued to worsen and  I started with other symptoms.  I was diagnosed with a different number of eye issues that ended up with having my lower tear ducts cauterized.  I could not drive for months and then I started having trouble breathing.  My...
  • kurlylocs

    Cervical, Blepharospasm, Voice issues??

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    I have been dx with Cervical Dystonia about a year ago and then about six months later with blepharospasm (eye dystonia). This all started with voice issues, but all docs still say it isn't spasmodic dysphonia. Now, I'm beginning to "stutter" at the beginning of a sentence/word. It doesn't happen often and I don't feel like it is a true stutter. I'm wondering if others had issues with beginning a...
  • deleted_user

    When it gets to be too much..

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    I was diagnosed with general dystonia about 4 years ago, though I'd had mild symptoms (which I stubbornly ignored) since my teenage years.. then it started getting much much worse and impossible to ignore.. severe muscle spasms, where I'd fling something I was holding involuntarily.. my fingers curl into my palms, my elbows don't want to extend, my left leg turns inward, my shoulders want to be...
  • krafttmj

    TMJ/Jaw Issues and Dystonia

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    Jaw Issues and TMJ can cause Dystonias- A highly specialized Oral Surgeon or Prostodontist with high references need be seen ( Caution: not just any Dentist- poor dental work can exaperbate issues!)See link : http://curefordystonia.com/category/framework/connection-to-tmj/
  • deleted_user

    Dystonia Petition for Awareness Month

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    Are all of you people signing the dystonia petition to make September Dystonia Awareness Month?https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz
  • krafttmj

    Magnesium important/Epsom Salts bath

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    Magnesium seems to be crucial to people with Dystonia- I would not supplement but maybe take an Epsom Salt bath once or twice a week - Cup of Epsom Salts dissolved in bath- Pretty warm bat, not hot- Soak for 10 -15 min. water will become hazy as water cools down ( this is when you know it has done its job - Great detox and relaxation bath too ! Try and see if it works for you without ill...