Patient Comments: Dystonia - Symptoms

What were your symptoms of dystonia?

Comment from: Mirage, 45-54 Male (Patient) Published: March 31

I have seen a doctor for 2 years now for my dystonia. I have had Botox A and B. It has helped me to a point, but has not gotten me back to the way I have been, as normal. The injections are very painful and burn. I was not born with dystonia. The treatment is not going to the best at this point. But there is always hope.

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Comment from: Kay, 45-54 Female (Patient) Published: August 21

We live in a woodsy area in the mid-south, so we have to really be careful, but sometimes the chiggers get us! We use Campho-Phenique, it is pricey at USD 3.95 for a little green bottle, but soak a cotton ball with it, and apply regularly. Resist the urge to scratch!

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Comment from: Nan, 55-64 Female (Patient) Published: October 15

I am 58 years old female, I and have had cervical dystonia for around 30 to 40 years, until around 7 years ago it became generalized. Medication and injections do help, but I am recently in a storm episode which has been a challenge. My left foot is turning inward, right is trying to do the same thing and the pain in my lower back, buttocks, legs and feet are intense. I have burning and stinging sensation and pain from my waist down and from both shoulder to my fingertips. This has been constant for over 5 years, but there is no nerve damage. My 33 year old son has started showing symptoms 2 to 3 years ago and he has progressed far faster than I did. He has gone from cervical to severe generalized in just 1 year which is causing a total disruption of his ability to work.

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Comment from: GeanBean, 45-54 Female (Patient) Published: October 15

I received injections of a drug called Toradol in my back around 6 months ago. I never had problems with my neck. Shortly after the treatment my neck became incredibly painful with muscles on the left side contracting involuntarily. I had a thorough examination by a neurologist who diagnosed me with cervical dystonia.

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Comment from: Trooper, 55-64 Female (Patient) Published: April 08

In 2006, I started noticing my right foot would not lift up properly. I was told I had foot drop and had surgery. It did not work. I kept wearing out the toes of my left shoe. I decided to go to the Mayo Clinic in Arizona, and see if they knew what was wrong with my foot. They said I had dystonia. I now wear a brace and can move just fine, but my foot and toes will still drag. It is very annoying, but does not hurt. I would like to know if this is focal dystonia, and if anyone else has it in their foot. Also, what can I do for this horrible problem? I have to always think about walking and lifting my left foot up. Any suggestions will help greatly.

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Comment from: jpat, 35-44 Female (Patient) Published: August 10

Dystonia started with twisting in my hands and arms a few years ago. I now have blepharospasm, tremors (head and arms) spasms in arms and legs both sides, twisting of my left foot inwards and on a bad day my right foot as well.

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Comment from: Angie, 45-54 Female (Patient) Published: March 16

With dystonia, I suffer with laryngospasms, voice problems, tremor in my neck and spasms in my diaphragm which causes me to get stuck in an exhale and have to fight to inhale. I also have chest wall spasms, facial spasms, tremors in the left arm and leg. Now I am beginning to get tremors in my tongue and jaw. I am unable to work because of my spasms.

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Comment from: Georgia, 45-54 Female (Patient) Published: November 27

I was recently diagnosed with Dystonia. I was also treated with pain injections in my back prior to the onset of this disease. I don't know if there is any correlation.

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Comment from: c/o 96, 35-44 Male (Patient) Published: March 30

I was diagnosed with generalized dystonia in 1981 when I was 11 years old. I had 2 brain surgeries at Westchester County hospital in New York that same year. The surgery corrected the problem about 70%.I started Botox injections in 1997 but had to stop because of the cost about 2 years ago. Have researched my family but have found no one else that ever had this condition.

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