Patient Comments: Dystonia - Experience


Please share your experience with dystonia. Submit Your Comment

Comment from: Obxgirl, 55-64 (Patient) Published: March 01

I'm 60 years old and I've been dealing with dystonia for 27 years. It got so bad I couldn't ride in a car, I had a feeding tube and wheelchair. One of my doctors who gave me injections told me to go to a neurosurgeon. My life quality was very low and when the doctor said that deep brain stimulation (DBS) may help (it doesn't work for everyone), I said let's go. The DBS has really changed my life for the better! No wheelchair no feeding tube, not falling all the time and less pain. I hope you all ask your doctor about DBS.

Comment from: small town girl, 35-44 Female (Patient) Published: April 12

I fought for 8 years to get a diagnosis with doctors saying it was all in my head. Even in MRIs they could see the spasms and attacks. I have had whiplash and have degenerative disc disease in 3 discs in my neck and have frozen shoulder. When I saw my neurologist I have now and after 2 emergency room visits he tested my foot and instantly it turned in and curled. He stopped and said I have severe and chronic lower limb dystonia. My hips turn in at times and I can barely walk. All it takes for me to have a severe dystonic attack is to bump my feet on something or for someone to barely rub against or the dogs to barely touch my feet, even sheets would and still can set it off. I was referred to my pain clinic and immediately the doctors agreed the only thing to help me is the baclofen pump. That was just about 3 years ago. I even had side effects from the surgery. My body is just that sensitive. I can only take Valium and Dilantin and nothing else. As it does absolutely nothing to help with the dystonia or I have severe reactions to it. I have diet controlled low blood sugar and the dystonia greatly affects it. Some days it's hard to keep my sugar level up. Since then I can walk around the house, and my dystonic attacks have calmed (went from 4 or 5 a day to 1 a day). I also have a motorized scooter and am housebound and can't be in water unattended. Yes, it's that bad. I'm more stable now than I was 3 years ago. Even today I still have severe attacks or just plain daily dystonic episodes. Having dystonia makes me realize each day I wake I never know what the day will bring.

Comment from: jimr55411, 45-54 Male (Patient) Published: January 07

I was in a car accident in 2009. I suffered whiplash and had C5 and C6 cervical bones fused. I was diagnosed with cervical dystonia soon after and started Botox. My head and neck are now rotated to the left and down. The Botox is now much less effective and I need more to get any relief. I retired in 2012 after having triple bypass heart surgery.

Comment from: Rich, 65-74 Male (Patient) Published: April 03

I'm 69 years old and was diagnosed with torsion dystonia, acquired, 6 months ago. The symptoms began suddenly and drastically, in a supermarket, 10 months ago. From my waist up, I lost control of my movements, including my arms and face/neck. After blood test, MRI, psychologists and many tests later, I was at an appointment with a neurologist, when I had an episode. After an exam of my symptoms, he diagnosed me with dystonia. I now take 4 levodopa-carbidopa pills a day, which help a lot, but it is still progressing.

Comment from: Kristine, 45-54 Female (Patient) Published: February 09

I was diagnosed with dystonia 10 years ago. I tried all of the medicines and Botox injections. Four years ago I had deep brain stimulation surgery. It worked, but is not perfect. I still take lots of medicines and still have the symptoms. I feel if I hadn't had the surgery, I would be in wheel chair.

Comment from: ouch, 45-54 Female (Patient) Published: November 12

I have extremely painful muscle spasms in my neck and back along the spine. The pain does not respond to Neurontin as neuropathy does, and it is getting worse.


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