Living with Distal hereditary motor neuropathy type 2
A genetic nerve condition that slowly weakens muscles, mainly in the legs, usually starting between the teen years and mid-adulthood.
Understanding Distal hereditary motor neuropathy type 2
This condition affects motor neurons, the nerve cells that tell muscles to move. Muscle weakness slowly gets worse over time, mostly in the legs. It often begins between the teen years and mid-adulthood with cramps or weakness in the big toe, then the foot. Over the next 5 to 10 years, lower leg muscles may shrink, which can affect walking. Some people also have weakness in the hands and forearms.
Signs & symptoms
GARD doesn't list specific symptoms for this condition separately, but the summary describes these features:
- Cramps or weakness in the big toe, then the foot
- Shrinking lower leg muscles (atrophy)
- Trouble walking
- High arches in the feet (pes cavus)
- Weakness in the hands and forearms
- Exaggerated reflexes (hyperreflexia)
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 The Foundation for Peripheral Neuropathy 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 a person's genes cause this condition. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: dhmn2; distal spinal muscular atrophy type 2; dsma2
Patient organizations
- 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 Distal hereditary motor neuropathy type 2.
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