Living with Neuronopathy, distal hereditary motor, autosomal recessive 3
A rare inherited nerve and muscle condition with slowly worsening weakness in the hands and feet that later spreads closer to the center of the body.
Understanding Neuronopathy, distal hereditary motor, autosomal recessive 3
It causes slowly worsening weakness and wasting that mainly affect the ends of the limbs. Later, the muscles closer to the center of the body and the trunk are involved, with a marked curve in the lower back. Late in the condition the diaphragm, the main breathing muscle, can be affected. It can start at a variety of ages.
Signs & symptoms
GARD doesn't list a symptom list, but the summary describes these features:
- Weakness and wasting in the hands and feet
- Weakness that spreads to muscles near the center of the body
- Marked curve in the lower back (hyperlordosis)
- Diaphragm weakness late in the condition
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
Muscular Dystrophy Association and 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: Muscular Dystrophy Association, 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 Cure SMA 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. A child inherits a changed copy of a gene from each parent (autosomal recessive).
Also known as: autosomal recessive distal spinal muscular atrophy type 3; dhmn3 and dhmn4; distal hereditary motor neuropathy type 3 and type 4; distal spinal muscular atrophy type 3; distal spinal muscular atrophy, autosomal recessive 3; dsma3
Patient organizations
- Cure SMANeuronopathy, distal hereditary motor, autosomal recessive 3 · United States
- Muscular Dystrophy AssociationNeuronopathy, distal hereditary motor, autosomal recessive 3 · 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, autosomal recessive 3.
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