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Conditions

Dystonia

Dystonia

Dystonia is a term that refers to a range of movement disorders that can affect the body, forcing it into awkward postures or positions. It is generally uncommon, yet it still affects around 38,000 people in the UK. Dystonia can form on its own, or as a result of another infection or trauma, such as a stroke, brain injury or Parkinson’s disease. The condition is not life-threatening, but it is incurable. Instead the condition must be managed, depending on its location and severity, with a combination of medication to reduce the severity of the spasms, muscle relaxants, physical therapy to trick the body into changing its behaviour, and in the most severe cases, surgery. The newest treatment available is called deep brain stimulation, and involves the implanting of a pulse generator into the brain to help block the abnormal nerve signals.

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Hi, my name is Tony. I'll be a young 52 y.o. in early April this year. This condition is very new to me, as I've had pretty much a sudden onset of many of the symptoms related to Dystonia. In actuality, this may have started a couple years ago, in which, I had started having shooting pain down my right arm and occasional inability to use my right hand for a couple months that eventually caused me to lose complete use of my right hand and stiffness and odd, uncontrollable movements of my arm, often accompanied by shooting pain. Then, about a year later, I began to regain use of my right hand and arm, and it slowly returned to normal... with only a short period every great now and then when it would act up, but, return to normal shortly later. A few months ago, I began to have these God awful cramps that started on the tops of my feet, and in these few months, progressively worsened as the cramps would travel up my legs (mostly the right side), sometimes to my buttocks, sometimes up to my lower back and sides. This is such an incredible pain that I never imagined before, causing my body to convulse in rather creepy distorted positions. There was no rhyme or reason whatsoever... my doctors, after running me through test after test and machine after machine, with no answers, acted as if this was a mental condition. So, I was sent to psychiatry which immediately, after seeing me and going by their best judgement, said "this is absolutely NOT psychological". Still, my doctors have no idea. I've had visiting nurses to my home over the past month(+), and one in particular had some interesting information for me the next time I saw her. She did much research and came upon Dystonia as a possibility. This was a welcomed idea, since my all-knowing doctors couldn't be bothered to do this research for themselves, I'm so disappointed, but, maybe... if this is Dystonia, I can at least eliminate questions marks surrounding my situation, and at least reduce some stress and anxiety. I felt like I was going insane. This is just another hurdle for me, though. I have been living with, and surviving HIV/AIDS for over 28 years now, have endured 3 separate bouts of cancer over the past 16 years in my lower abdomen/nether regions (today I am still cancer-free), and numerous side-effects I have to deal with daily due to the disease and all the medications I am having to ingest regularly. In addition to all of this, about the time that I started experiencing these cramps from hell, I have also been having a series of blackouts, again, no rhyme or reason, they just happen at any given time, so, needless to say, much of my independence has quickly been stripped away from me... no more driving, no walking my beautiful Old English sheepdog named Echo (without someone accompanying us), etc etc. Anyway, at this point, I am struggling to keep depression at bay, but have a strong fight in me still, which is probably my saving grace... in addition to a long-term dedicated partner/spouse & a rather large circle of friends who surround me and cheer me on through the good AND bad days. I'm a good example, in the fact, that you didn't have to live a risky, dangerous life-style... never a drug user, nor promiscuous, & known for being more of a 'goody two shoes', in a way. Sometimes, bad things just happen to good people, right?! Anyway, I'm glad I came upon this site, and am able to read & learn of others who are in the same boat as me, in many ways. I don't feel so alone now. I had started becoming quite a recluse, stopped going out and being with people I normally spend time with and doing things outside my home that I typically enjoy. About a week ago, I joined friends for karaoke which was a regular weekly thing (with a live band... woohoo!) and got up on stage and sang my heart out. I was close to going down at one point, and struggled somewhat because of my erratic body movements, but, got through it, and it felt amazing. I suggest to anyone going through this, or any health-related ordeal (depending on the situation, of course), to not give up on the things you love. They can help you cope and grow. Maybe even beat the invisible monster that has taken over your body. Best wishes to all of you, be well, peace. Tony





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Not only is this tiring and hard on the person living with it, it is also hard on the ones who love and care for them, But when you truly love someone you do what ever you have to do to make them comfortable safe and happy. I will continue to stand bye Tony for as long as it takes or as long as I physically can.

My mother was an RN, and I learned from her and being around her in practice that if you want to know anything, just ask a nurse :-)

My mum has a form of dystonia which courses her to have facial spasams and had forced her hands to close permently is there anything that will help her please.





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I'm 20 years old and I have a weird twitch in my face - I have had it for about 5 years but I have never done anything about it - it doesn't bother me but it would be nice to know why I do it.. My nostrils wiggle (like when you impersonate a rabbit) and my ears also wiggle up and down. I don't know I'm doing it until someone says something about it. It would be nice if I could stop. What can I do?





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I'm planning to have a tattoo on my left foot which happens to be the area in which my dystonia affects me and I was wondering if having the tattoo will have any impact on my foots condition?





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I have recently been diagnosed with meige's disease (oro mandibular dystonia) at the age of 52. The main problem is that my speech has deteriorated so much that I've had to go on sick as I can't speak to my staff for any period of time. My own GP is struggling on how to deal as I had to go to London to be diagnosed after 7 years of misdiagnosis locally . Can anyone who has same illness offer me any guidance / direction on how they 'managed' their condition.





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Hi! I have had Parkinson's for 20 years now, and I'm 63. I found something that helps shorten the duration of the severe cramping in of my feet! My neurologist looked at the ingredients, and said there wasn't anything in it that would make it work, but it does (for me, anyway and I hope it will for you, too!! The brand name is Highland's, and it's simply called "Leg Cramps". At the first sign that your foot is going to turn in, put 3-4 tablets under your tongue and let them quickly dissolve. I usually need 4 to stop the cramp before it goes "full-blown". I keep a bottle with me in my purse, in the bedroom in case it starts when I first get up, etc. I would have had to stop working if I my local pharmacist hadn't told me about Highland's Leg Cramp. It has given me my life back and has allowed me to continue working. Good luck to you!

I have YOP and for past year getting dystonia in my feet which now happens anytime of the day. The pain is unbearable I cannot walk and feel like smashing my feet with a hammer...I cannot believe it cant be controled with anything. I really feel my doctors dont give a dam about my condition and my council have taken my blue badge away. I feel so sorry for my daughter we did and went everywhere together, now she has to see me in pain. Im trying to carry on working as self employed but finding it so hard. My daughter has paid for a holiday to Turkey in six weeks time now Im thinking I wont get there. Im so down and depressed.





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I hope your doctors have tested for B12 deficiency - the ignorance of the medical profession about B12 deficiency is staggering. The blood tests are also flawed so it can go undiagnosed or patients are told their levels are normal so they go untreated. Some labs and hospitals are now doing the new Active B12 test because they know how flawed the current tests are.

I'm 17 and have just been diagnosed with dystonia. It's in my foot and causes it to turn inwards causing me a lot of pain a lot of the times on the day. I was a dancer but I've been told I won't have the strength in my foot and leg again to ever be able to dance like I used to. Im embarrassed to wear shoes that show my feet off as afraid of what people might say so I live in converses nearly 24/7. I'm having physio and this is helping but I wish there was another way so I don't have to be doing physio exercises for the rest of my life.





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I was diagnosed with general Dystonia aged 7, it got so bad for a long period of time in a wheel chair. Doctors told me i'd always struggle to do sports, but with hard work your body adapts very well to continuing exercise even during severe spasm. Over the years I have trained very hard I have represented Great Britain for athletics, and I am currently Representing Great Britain For Bobsleigh. I found that a lot of my symptoms reduced by concentrating on various forms of exercise. Don't give up on dance, people are more understanding than you think. Especially doing something that clearly means a lot to you if anything it's a cause for admiration. Show people you have difficulties, but show them how well you can do it regarding. It does get hard dealing with the symptoms at times, but having Dystonia is never a reason to give up on something just take time to think about how you can do it your way!

I have been doing a lot of reading on the use of magnesium supplements.. I am wondering if anyone has used magnesium therapy to treat this condition.. I don't have the condition I just seen the show last night showing the young women and wondered if magnesium therapy would help.. Thank you. Best of Luck





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In reply to your comment I have been diagnosed with dystonia and have recently had my first botox injection . My sister who is a nurse in Australia suggested magnesium tablets and powder which I have used before my injections and still am using and have found them very beneficial ,I get no pain what so ever now . Liz

Hi i hav a pain in my left arm change pill twice thinking Its that. But on noriday pill and still the same Pain a bit in my right arm My belly fills bloted as well Some times a pain gos across chest now and Again Had a dead pain in my left leg still a bit ther What is this?? So tried all the time?





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I've had cervical dystonia for about 10 years. In agony. Getting botulin injection which don't work but nobody wants to know. Lost confidence, unsteady and don't want to live anymore. Bed is my life for bit of relief. Can't say anymore as so upset. Sorry.





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See I'm terrified to talk about the emotions I have because of what Cervical Dystonia has done to me. I break down when I'm in too much pain, and being at college full time is basically an invitation for people to stare and judge me. I was bed bound after surgery for one and a half years because of it. People are fed up hearing of my pain, too. "Its no excuse to stay off" "You obviously don't care about doing something with your life" I'm 20, I want to be travelling, going to uni, following my dreams to be a herpetologist. But apparently, because I'm struggling to make it through college, I don't care. I really hope your pain has lessened since this comment, as no one should be made to feel like this. Show these people videos of other sufferers, force them to watch them. A bad neck puts the whole body in pain.. People need to stop judging and either ignore it or try to understand it. Rant over!

I suffer with Cervical Dystonia too & fully understand the pain, embarrassment & distress it can cause. Please go and speak to your GP, if they don't listen, see another GP until you do get the help you need. I had to push & push & still do - very few people know about Dystonia, including those in the medical profession, and unfortunately its up to us to educate & insist on what we want/need. Don't give up! Lou x

I feel so sorry for you ... I understand how you feel because I have the same condition as you... I have had it for 30 years. Injections do help but nothing I have found takes it away... You just try to alter your position when talking to someone and put a hand under your chin or some other trick to try to stop your head tremouring... Stress of any kind makes it worse and I easily do get stressed!!! I have managed to continue working part-time .. But Dystonia stopped me years ago from trying to get a career as I can't stand to be getting too much attention.. I would die if I had to make a speech or anything like that. Friends think I am outgoing but inside I am fighting a battle. Alcohol helps at the time but worse when wears off !!! Avoiding caffeine I find helps. Obviously avoiding stress but that is not easy is it.....


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