Living with Periodic paralysis with later-onset distal motor neuropathy
A rare genetic muscle and nerve condition with sudden episodes of weakness in the arms and legs, followed later by slow nerve damage.
Understanding Periodic paralysis with later-onset distal motor neuropathy
People have sudden episodes of muscle weakness in the arms and legs. Later, they develop slowly worsening nerve damage that affects the muscles farthest from the center of the body (hands and feet). It usually appears in the teenage years or adulthood. GARD lists it as mitochondrial.
Signs & symptoms
GARD doesn't list specific symptoms, but the summary describes:
- Sudden episodes of muscle weakness in arms and legs
- Slowly worsening nerve damage in the hands and feet
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
United Mitochondrial Disease Foundation and MitoAction 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: United Mitochondrial Disease Foundation, MitoAction
- 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 Periodic Paralysis Association 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
Changes in the genes (also called variants) cause this condition. GARD lists it as mitochondrial, which means it involves the cell's energy-making parts, and doesn't name a specific gene.
Patient organizations
- Periodic Paralysis AssociationPeriodic paralysis with later-onset distal motor neuropathy · United States
- United Mitochondrial Disease FoundationMitochondrial diseases · United States
- MitoActionMitochondrial diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Periodic paralysis with later-onset distal motor neuropathy.
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