Overview
Peripheral motor neuropathy-dysautonomia syndrome is an extremely rare condition that affects both the peripheral motor nerves and the autonomic nervous system. The peripheral motor nerves are the nerves that control voluntary muscle movement in the arms and legs, while the autonomic nervous system controls automatic body functions like heart rate, blood pressure, sweating, digestion, and bladder control. When both systems are affected, patients experience progressive muscle weakness and wasting (particularly in the hands and feet) along with problems regulating these automatic body functions. Symptoms typically include weakness in the limbs that may start in the feet and hands and gradually spread, difficulty with balance and walking, abnormal sweating, episodes of low blood pressure upon standing (orthostatic hypotension), digestive problems, and urinary difficulties. The severity and progression can vary between individuals. Because this condition is so rare, treatment is mainly supportive and symptom-based. There is no known cure. Management focuses on physical therapy to maintain muscle strength and mobility, medications to manage blood pressure instability and other autonomic symptoms, and assistive devices as needed. A multidisciplinary team of specialists is usually required to address the various aspects of this syndrome.
Also known as:
Key symptoms:
Progressive muscle weakness in hands and feetMuscle wasting (loss of muscle bulk)Difficulty walking or balance problemsDizziness or fainting when standing upAbnormal sweating (too much or too little)Digestive problems such as constipation or diarrheaBladder control difficultiesNumbness or tingling in the extremitiesRapid or irregular heartbeatDifficulty with fine motor tasks like buttoning clothesFatigueFoot deformities such as high arches or hammertoesLow blood pressure episodes
Clinical phenotype terms (7)— hover any for plain English
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Peripheral motor neuropathy-dysautonomia syndrome.
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Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Peripheral motor neuropathy-dysautonomia syndrome.
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Caregiver Resources
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Mental Health Support
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What tests will be done to confirm this diagnosis and rule out other conditions?,How quickly might symptoms progress in my case?,What medications or therapies can help manage my autonomic symptoms?,How often should I have follow-up appointments and with which specialists?,Are there any clinical trials or research studies I could participate in?,What should I do if I faint or have a severe drop in blood pressure?,What lifestyle changes can help me manage my symptoms day to day?
Common questions about Peripheral motor neuropathy-dysautonomia syndrome
What is Peripheral motor neuropathy-dysautonomia syndrome?
Peripheral motor neuropathy-dysautonomia syndrome is an extremely rare condition that affects both the peripheral motor nerves and the autonomic nervous system. The peripheral motor nerves are the nerves that control voluntary muscle movement in the arms and legs, while the autonomic nervous system controls automatic body functions like heart rate, blood pressure, sweating, digestion, and bladder control. When both systems are affected, patients experience progressive muscle weakness and wasting (particularly in the hands and feet) along with problems regulating these automatic body functions.
Which specialists treat Peripheral motor neuropathy-dysautonomia syndrome?
3 specialists and care centers treating Peripheral motor neuropathy-dysautonomia syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.