Living with Peripheral motor neuropathy-dysautonomia syndrome
A rare condition with slowly worsening muscle weakness in the hands and feet and problems with automatic body functions.
Understanding Peripheral motor neuropathy-dysautonomia syndrome
Weakness slowly worsens in the muscles farthest from the center of the body, and muscle wasting begins in childhood. The autonomic nervous system, which controls automatic functions, is also affected. This causes heavy sweating, bluish cold hands and feet, drops in blood pressure on standing, and a swallowing tube problem called achalasia.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Muscle wasting (atrophy)
- Heavy sweating
- Bluish hands or feet, especially in the cold (acrocyanosis)
- Swallowing tube not relaxing (achalasia)
- Reduced reflexes
- Joint stiffness
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 genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Dysautonomia International may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Dysautonomia International
- 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 Dysautonomia International
- 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
Changes in the genes (also called variants) cause this condition. GARD doesn't list a specific gene.
Also known as: hereditary dysautonomia with motor neuropathy; lisker garcia ramos syndrome; lisker-garcia-ramos syndrome; peripheral motor neuropathy associated with autonomic dysfunction; peripheral motor neuropathy dysautonomia syndrome
Patient organizations
- Dysautonomia InternationalPeripheral motor neuropathy-dysautonomia syndrome · United States
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