My hands cramp when I clean or cook sometimes flares up when I'm trying to write or type but its usually just cooking and cleaning mostly. I had an emg and nothing shown on my right arm or hand. Dr said something was wrong with my left elbow but because it happens equally in my left and right hand she wants me to do an mri but I can't afford one right now.
I have throat dystonia. No one is listening. I've had this for 16 or maybe 17 yrs. I have quit breathing multiple times. I wish someone would listen to me. This is not anxiety. They keep giving me anxiety medication. Where these meds are awsome, they do not help. I just recently found. A. name. Alcohol helps very much.i do nor like drinking. I wish someone would listen. I've starred to quit breathing when I sleep. I wish.someone would listen. I just want someone to listen
I really would like to know what it is exactly what you do with this tool. Rubbing one neck muscle? Does the tool have a name. Is there a video with those exercises? Thank you for your story.
I’m very curious what your thoughts are on “serial casting” for foot dystonia. My daughter was recently diagnosed with generalized dystonia and doctors have done 2 rounds of serial casting on her feet. Both times have disabled her completely. First time took at least 6 months to learn to walk again. This time she has yet to walk since I demanded they remove the casts. Starting Botox injections next week then they want to continue casting her feet. I don’t want this at all. But I need a dystonia doctor to confirm my belief that the casting is making her dystonia worse.
I went to 35 medical professionals, including 4 speech therapists and 8 neurologists. I diagnosed this myself after 4 1/2 years. It is only treated correctly by a movement disorder neurologist specializing in dystonia such as at northwestern in Winfield, Il. Dr. Gera gopal. The general and even a couple movement disorder neurologists had no clue. Good luck to you!
I’ve have lower limb Dysonia one foot and leg had it since 12 I thought it was normal and only started research it cause it has increased in episodes that it takes place it randomly happens when I lay down or sat down….. but I’m not aware of it being related to Parkinson’s I need to ask my doctors cause I always thought this was normal infill I started having contractions 2-3 days and my toes curl and fold on top of eachther
hardly ever included with fibromyalgia and never treated for the pain with actual pain medication. Treated with literally anything else is a wide open doorway to patient abuse by undermedicating the patient. its cruel behavior by NPs and PAs to ignor patients pain.
I’ve been living with this condition for 35 years now. Initially I saw a gp who dismissed me as being a time waster. That put me off ever seeking help. I have brief respites from it very occasionally. No apparent reason why, but in those times I no longer feel like a freak. I have noticed that the less at ease I feel with someone, the harder it becomes to speak. If I get really anxious I can barely speak at all. As a result, I shy away from people and situations in order to avoid the embarrassment and shame I feel, and the more negative attention it gets the worse it becomes. It’s a catch 22 and I can honestly say it has held me back from being the person I know I am inside. Funnily enough, I am a professional saxophonist and sing backing vocals in bands. I imagine speaking and singing use different parts of the brain. Is there any organisation in the UK that anyone knows of who I might get in touch with? If so, please drop me a message. I live in hope 🙏
Parkinson disease🤢 is a very terrible illness, my Dad suffered from it for 19 years until we finally got a help and a medicine from Dr Madida that truly works that helped treat, cure and reversed all his symptoms completely💯…My Dad is well again...
Hi dr hi whean tell because my problem neck problem after surgery scoliosis my posters new my head cramp and muscle vekenas full body go to poster back normal how can do dr.ples pls help me.
Oh my gosh. I just learned that the guy in this video- Adam Kalinowski - is no longer with us. He died roughly a year ago, at the age of 37, following a tragic accident on 10 November, 2022. He was diagnosed in 2006 and went on to form a support group then became the president of Dystonia Europe. What a loss! But what a legacy! There are a lot of dystonia heroes out there and he is definitely one of the greatest. I'm in Australia. Never even heard of Dystonia Europe until today. This video is a gift. Thanks Adam RIP
This is the BEST video on Cervical Dystonia I have ever seen. I can relate to every moment of this brief video. There is also the 'silent' cramp-like pain through the neck muscles the whole time to contend with - pain that would put most people out for the day - but we get up and go do life with it.
Wow, I’ve just stumbled across this, I doubt Amybel would remember me, but I was her teacher when she was in year 4. Despite any problems she had she always remained smiley and happy. How amazing that she is now a dr and an advocate for her condition.
Hello, my fiance has been with cervical dystonia for 5 years now. He has been taking different medications but all in vain. How can you help him to overcome it? Thank you!
I have the same cerficial dystonia. My head tilts towards my shoulder and I wiggle my head slightly back and forth. Just like the gentleman in the video. My shaking isn't that intense yet. But I'm afraid that it could get worse. Greetings
Painful to watch..it happens to me..also I can nod yes .. or get tremors or have my chin to my neck..I have general Dystonia.. everyday is different..😢
With my cervical dystonia, my head position was awkward, prompting coworkers and even family members to ask why I was holding my head that way. Even after explanation, I wasn't sure it clicked with people or that they truly understood. These comments and looks were as troubling as the pain. Dystonia is like being a puppet controlled by someone else. Thank you for doing these videos to raise awareness.
