Patient Comments: Dystonia - Symptoms


What were your symptoms of dystonia? Submit Your Comment

Comment from: Paula, 45-54 Female (Caregiver) Published: December 29

Yesterday I was sledding in the snow down a hill in my yard to smooth it so I could ski. I was cross-legged on the disk and the powder was so deep I didn't even get going that fast, but at some point I veered out of the track I had made with snowshoes and headed straight for a tree. I hit the tree with the left shoulder and arm and the impact made my right leg fly out from its position and I felt an immediate excruciating pain in my right buttock and back of thigh. I could hardly limp back into the house. We have stairs, and I am having a hard time going up and down them. I don't know for sure if I pulled the hamstring, glutes, or both, or if it is just my sciatica, but it sure hurts when I sit down and if I do anything that stretches those muscles.

Comment from: LivingwithDystonia, 45-54 Male (Patient) Published: January 30

I was first affected with what I now know as right-sided segmental dystonia, around the year 2000. I have had a dystonic reaction to a nausea medicine once before. But this was totally different. On this night I was eating dinner, I had terrible back pain from an injury and I went upstairs to lay down. All of a sudden I started having spasms. I also balled up into a fetal position. My right eye was closed, and my head turned to the right side. My mouth started opening and closing and my right arm locked up. And eventually my mouth clamped shut. I went to the hospital by ambulance that night, and about 15 other times that summer. I have seen numerous neurologists, movement disorder specialist, and other doctors. The foremost expert said the only thing I could do was to have a deep brain stimulator implanted. They could not guarantee that this would work. So I have dystonia an average of four times per week and have had for about 13 years now. My dystonia is brought on by pain and associated stress. When it is real bad it is relieved by intravenous Benadryl and Ativan or Valium. I have built up such a tolerance to these medications that it can take hundred milligrams IV Benadryl pain medicine and Ativan to try and control it. I will speak in more detail at a later date about how my dystonia affects me.

Comment from: faithand strength, 65-74 Female (Patient) Published: March 20

It started with a stroke in 1989, I was wheel chair bound, paralyzed part of the time for hours. Then seizures started. I had them for 8 years constantly. The dystonia came on with gradual tremors in arms and hands. I had freezing of my feet often and always in steps. My head pulled to one side always and my one foot twisted if resting. Then both feet went numb and I walked on my ankles; not humanly possible, I thought. Nine neurologists said it was mental, the 10th told me it was dystonia. He gently turned my hand around 3 times and my hand spasmed up outstretched. Years later a doctor turned a foot and the other turned the same by itself; same with my hands. I fight depression and constant pain. I take over 200 over the counter pain pills a month. My whole body spasms. My hips are giving out they are misaligned, always one at least. I have an electric wheel chair, but hate to give in! I had 13 injections into my spasmed neck. Days later I could lift it off my shoulder. I am 66 years old.

Comment from: chopin, 55-64 Female (Patient) Published: November 21

I am 61 and was diagnosed with acute torsion dystonia in 2001. I had always walked with a slight limp due to the effects of having encephalitis as a baby. But in 1997 I started falling down. I went to several doctors and was finally sent to a neurologist. Artane was prescribed but only caused me to lose weight and my concentration. I no longer take it and walk with a walker or hanging on to someone. Physical therapy has helped me this past summer as well as riding a stationary bike. I still have to take muscle relaxers or my left leg and foot will contract without it and it's very painful.

Comment from: Taydens Momma, 7-12 (Caregiver) Published: November 06

My son has cerebral palsy and acquired dystonia (secondary dystonia). He has been getting worse the older he gets. He can't stand, talk or sit up anymore. He is so crippled up due to the dystonia and is in a great deal of pain. It has gotten so bad my son can hardly eat anymore and has had to have a feeding tube placed. My son has tried several medications and has had over 10 surgeries and nothing seems to help. Mentally he is aware of what is going on by the way.

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.

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!

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.

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.

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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