Living with Progressive encephalomyelitis with rigidity and myoclonus
A rare stiff person syndrome that causes muscle stiffness, spasms, and jerks.
Understanding Progressive encephalomyelitis with rigidity and myoclonus
It causes stiffness in the limbs and trunk, spasms set off by certain triggers, and sudden muscle jerks (myoclonus). It can also affect the autonomic nervous system, which controls body functions like heartbeat, as well as the brainstem. Symptoms get worse over time. GARD says onset can be in infancy or adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD describes these features:
- Stiffness in the arms, legs, and trunk
- Muscle spasms set off by certain triggers
- Sudden muscle jerks (myoclonus)
- Problems with automatic body functions (autonomic)
- Brainstem involvement
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 hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The Stiff Person Syndrome Research Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: The Stiff Person Syndrome 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 The Stiff Person Syndrome 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
GARD says it may be linked to certain antibodies in the body (glycine receptor or glutamic acid decarboxylase antibodies) or to tumors in the thymus or lymph nodes.
Also known as: perm; progressive encephalomyelitis with rigidity
Patient organizations
- The Stiff Person Syndrome Research FoundationProgressive encephalomyelitis with rigidity and myoclonus · United States
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Perspectives from people navigating life with Progressive encephalomyelitis with rigidity and myoclonus.
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