Living with Neuronopathy, distal hereditary motor, type 5
A rare inherited condition of the spinal cord's motor nerve cells that causes weakness in the hands first, often starting in the teen years.
Understanding Neuronopathy, distal hereditary motor, type 5
Damage to the motor nerves causes muscle weakness that worsens over time, mostly in the hands and feet. Signs usually begin in adolescence but can appear from infancy to the mid-30s. The first symptom is often hand cramps brought on by cold. The key signs are weakness and wasting of the hand muscles near the thumb. About half of people also develop weakness in the feet and lower legs.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hand cramps brought on by cold
- Weakness in the hands and arms
- Wasting of hand muscles near the thumb
- Weakness in the lower legs and feet
- Unsteady walk
- Reduced vibration sense
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
The Foundation for Peripheral Neuropathy 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: 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 CureARS 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 says changes in genes cause this condition. It is autosomal dominant, which means one changed copy of a gene can be enough to cause it. It can share a genetic cause with Charcot-Marie-Tooth disease.
Also known as: dhmn5; dhmn5 - distal hereditary motor neuropathy type 5; distal hereditary motor neuropathy type 5; distal hereditary motor neuropathy type v; distal hmn v; distal spinal muscular atrophy type 5
Patient organizations
- CureARSNeuronopathy, distal hereditary motor, type 5 · 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 Neuronopathy, distal hereditary motor, type 5.
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