Living with Morvan syndrome
A rare acquired nerve condition with muscle twitching, trouble sleeping, and changes in thinking and body functions.
Understanding Morvan syndrome
It involves neuromyotonia (nerve-related muscle stiffness and twitching), dysautonomia (problems with automatic body functions), and brain disease with severe insomnia. Signs can include hallucinations, confusion, memory loss, blood pressure changes, heavy sweating, painful cramps, weight loss, itching, and fever. A thymoma (a tumor of the thymus gland) is present in some cases. It usually starts in adulthood.
Signs & symptoms
GARD doesn't list a set of most common symptoms for this condition. Its summary describes these features:
- Severe insomnia
- Muscle twitching and painful cramps
- Hallucinations, confusion, or memory loss
- Blood pressure changes and heavy sweating
- Weight loss and fever
- Itching
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 seizure and epilepsy specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Epilepsy Foundation and The Foundation for Peripheral Neuropathy may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Epilepsy Foundation, The Foundation for Peripheral Neuropathy
- 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 Epilepsy 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 describes this as an acquired disease, and a thymoma is present in some cases. GARD does not list a specific gene or cause.
Also known as: limbic encephalitis-neuromyotonia-hyperhidrosis-polyneuropathy syndrome; limbic encephalitis, neuromyotonia, hyperhidrosis, polyneuropathy syndrome; morvan fibrillary chorea; morvan's fibrillary chorea
Patient organizations
- Epilepsy FoundationEpilepsy · United States
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Morvan syndrome.
Explore research for Morvan syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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