Dystonia

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What is dystonia?

Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal posture due to disordered tonicity of muscles. Sustained muscle contraction (dystonia) may be caused by a number of conditions.

Common symptoms reported by people with dystonia

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people for dystonia

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Botox)
Type
Prescription Drug
How many have tried
115
Tried for
dystonia (9)
Treatment name(s)

(Sinemet)
Type
Prescription Drug
How many have tried
149
Tried for
dystonia (4)
Treatment name(s)

(Outpatient PT)
Type
Physical Therapy
How many have tried
151
Tried for
dystonia (3)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
128
Tried for
dystonia (2)
Treatment name(s)

(Mylan-Baclofen)
Type
Prescription Drug
How many have tried
127
Tried for
dystonia (1)

Data from patients with dystonia, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
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Compare treatments taken by people with dystonia

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Botox)
Perceived effectiveness
for dystonia (7 evaluations)
Side effects
fatigue headaches 6 more
Total evaluations
8
Tried for
dystonia (9)
Treatment name(s)

(Sinemet)
Perceived effectiveness
for dystonia (1 evaluation)
Side effects
nausea
Total evaluations
1
Tried for
dystonia (4)
Treatment name(s)

(Outpatient PT)
Perceived effectiveness
for dystonia (1 evaluation)
Side effects
weakness in leg(s)
Total evaluations
1
Tried for
dystonia (3)
Treatment name(s)

(Klonopin)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
dystonia (2)
Treatment name(s)

(Mylan-Baclofen)
Perceived effectiveness
for dystonia (1 evaluation)
Side effects
nausea and vomiting
Total evaluations
1
Tried for
dystonia (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with dystonia, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
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Who has dystonia on PatientsLikeMe?

  • 0 new patients joined this month
  • 224 say dystonia is their primary condition

Age
Age Proportion # of patients
<20 6
20s 30
30s 67
40s 97
50s 131
60s 150
70+ 71
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 52
20-29 years 30
30-39 years 43
40-49 years 48
50-59 years 37
60-69 years 14
70+ years 5

Distribution of sex

Sex
Sex Proportion # of patients
Male 137
Female 416

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 254
Not Diagnosed 28

These charts show data from dystonia patients who have completed their condition history
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