Living with Facial onset sensory and motor neuronopathy
A rare, slowly worsening nerve condition that starts with facial tingling and numbness in adults.
Understanding Facial onset sensory and motor neuronopathy
It starts with tingling and numbness in the face, which spreads to the scalp, neck, upper trunk, and arms. Later come muscle symptoms such as cramps, twitches, trouble swallowing, slurred speech, weakness, and muscle shrinking. A key sign is a reduced or absent blink reflex when the eye is touched. It usually begins in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Tingling or numbness in the face
- Muscle twitches
- Muscle weakness
- Trouble swallowing (dysphagia)
- Slurred speech (dysarthria)
- Muscle wasting
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.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 the cause is currently unknown. Most cases occur by chance in people with no family history.
Also known as: facial onset sensory and motor neuronopathy syndrome; fosmn (facial onset sensory and motor neuronopathy) syndrome; fosmn syndrome
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Facial onset sensory and motor neuronopathy.
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