Living with Opsoclonus-myoclonus syndrome
A rare nervous system disorder with rapid, jumpy eye movements, sudden muscle jerks, poor coordination, and irritability.
Understanding Opsoclonus-myoclonus syndrome
Symptoms include rapid, multi-directional eye movements (opsoclonus), quick, involuntary muscle jerks (myoclonus), uncoordinated movement (ataxia), irritability, and sleep problems. The disease may become chronic. GARD lists onset as infancy and childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Rapid, multi-directional eye movements (opsoclonus)
- Quick, involuntary muscle jerks (myoclonus)
- Trouble coordinating movement (ataxia)
- Irritability
- Sleep problems
- Behavior changes
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
Specialists who may be involved include brain and nervous system specialists and eye disease specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Child Neurology Foundation and other patient organizations
- 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
GARD doesn't describe a cause for this condition yet. It lists some related tumors, such as neuroblastoma, among its associated features.
Also known as: ataxo-opso-myoclonus syndrome; dancing eye syndrome; dancing eye-dancing feet syndrome; dancing eyes-dancing feet syndrome; infantile polymyoclonus; kinsbourne syndrome
Patient organizations
- Child Neurology FoundationOpsoclonus-myoclonus syndrome · United States
- OMSLife FoundationOpsoclonus-myoclonus syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Opsoclonus-myoclonus syndrome.
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