Living with Myoclonic dystonia 11
A genetic movement condition (myoclonus-dystonia) with sudden muscle jerks and muscle tightening, starting in childhood or the teen years.
Understanding Myoclonic dystonia 11
The jerks mostly affect muscles near the core of the body. Most people also have muscle contractions they can't control, which can cause neck twisting (torticollis) or hand cramps (writer's cramp). Symptoms usually start in the first or second decade of life. In some adults, symptoms improve with alcohol. Some people also have depression, anxiety, panic attacks, or obsessive-compulsive disorder.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Sudden, brief muscle jerks (myoclonus)
- Muscle tightening (dystonia) in the arm
- Twisted neck (torticollis)
- Writer's cramp
- Depression
- Anxiety (less commonly)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Dystonia Medical Research Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Dystonia Medical Research Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Dystonia Medical Research Foundation
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
It is caused by changes in the SGCE gene. It is autosomal dominant, which means one changed copy of the gene is enough to cause it.
Also known as: dystonia 11; dystonia-11, myoclonic; dystonia, alcohol responsive; dyt11; myoclonic dystonia type 11; myoclonus-dystonia
Patient organizations
- Dystonia Medical Research FoundationMyoclonic dystonia 11 · United States
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