Living with Hereditary motor and sensory neuropathy, Okinawa type
A rare inherited nerve condition with slowly worsening muscle weakness, cramps, and numbness, starting in adulthood.
Understanding Hereditary motor and sensory neuropathy, Okinawa type
It causes slowly worsening weakness and wasting in muscles close to the center of the body, painful muscle cramps, muscle twitching, and reduced feeling in the hands and feet. Reflexes are absent. It occurs mostly, but not only, in people from the Okinawa region of Japan and their descendants.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weakness in the arms and legs
- Painful muscle cramps and spasms
- Muscle twitching (fasciculations)
- Reduced feeling in the hands and feet
- Absent reflexes
- Trouble standing or walking
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.
- 3Consider genetic testing
Changes in TFG are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Hereditary Neuropathy Foundation Inc. 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: Hereditary Neuropathy Foundation Inc., 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 Hereditary Neuropathy Foundation Inc. 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
It is caused by changes in the TFG gene. It is autosomal dominant, so one changed copy of the gene is enough.
Also known as: hereditary motor and sensory neuropathy okinawa type; hereditary motor and sensory neuropathy proximal type; hereditary motor and sensory neuropathy, proximal type; hmsno; hmsnp
Patient organizations
- Hereditary Neuropathy Foundation Inc.Hereditary motor and sensory neuropathy, Okinawa type · 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 Hereditary motor and sensory neuropathy, Okinawa type.
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