Living with Lewis-Sumner syndrome
An acquired nerve condition that mostly affects the arms and hands through nerve inflammation.
Understanding Lewis-Sumner syndrome
It is also called multifocal acquired demyelinating sensory and motor neuropathy. Symptoms come from inflamed nerves leading to the upper body and loss of myelin, the fatty covering that protects nerves. It can occur at any time in life. It can be hard to tell apart from other nerve conditions.
Signs & symptoms
GARD doesn't list a symptom list for this condition. Its summary says it mainly affects the arms and hands.
- Nerve inflammation in the upper limbs
- Damage to the covering of nerves (myelin)
- Sensory and motor nerve problems
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
GBS/CIDP Foundation International, Global Autoimmune Institute and The Foundation for Peripheral Neuropathy may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: GBS/CIDP Foundation International, Global Autoimmune Institute, 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 GBS/CIDP Foundation International 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 an acquired condition, which means it is not inherited. GARD says the exact cause is not known.
Also known as: madsam; multifocal acquired demyelinating sensory and motor neuropathy
Patient organizations
- GBS/CIDP Foundation InternationalLewis-Sumner syndrome · United States
- Global Autoimmune InstituteLewis-Sumner syndrome · 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 Lewis-Sumner syndrome.
Explore research for Lewis-Sumner syndrome
Explore actively recruiting Lewis-Sumner syndrome studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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