Patient Comments: Dystonia - Symptoms

Question:What were your symptoms of dystonia?

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.

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.

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.

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.

Comment from: JazzyLily, 55-64 Male (Caregiver) Published: August 18

My 59 year old husband has had Early-Onset Parkinson's Disease for 29 years. He developed Dystonia last year after a bout of Cellulitis that migrated and became Bacterial Encephalitis. He has been bent to the right from the waist up at a 45 degree angle for the last 11 months. We saw his Neurosurgeon and he called for an MRI. We waited 10, yes 10 months for the MRI, then saw the Neurosurgeon again. He kept us waiting for 2 hours, then read the MRI and now wants a Catscan! We have been waiting more than 2 weeks just to find out the date of the catscan. My husband is suicidal from the pain...I hope the Catscan date will be soon...

Comment from: Amy, 25-34 Female (Patient) Published: March 08

I am a 26 year old female and was diagnosed with dystonia 2 months ago. My symptoms started immediately after having pain management injections in my back. I had 6 injections, 3 on each side of my spine. I had absolutely no symptoms of dystonia prior to these injections. I'm anxious to know if anybody has experienced a similar situation.



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