Living with Neuromyelitis optica
An autoimmune condition that attacks the eye nerves and the spinal cord, causing vision loss, weakness, and numbness.
Understanding Neuromyelitis optica
In an autoimmune condition, the immune system attacks the body's own tissues. In neuromyelitis optica, it causes optic neuritis (inflammation of the nerve from the eye to the brain, with eye pain and vision loss) and transverse myelitis (inflammation of the spinal cord, causing weakness, numbness, and paralysis). There are two forms. The relapsing form is the most common. It has repeated episodes, months or years apart, usually with partial recovery in between.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Eye pain
- Vision loss in one or both eyes
- Inflammation of the spinal cord (myelitis)
- Weakness or paralysis in the legs
- Bladder control problems
- Numbness or changes in sensation
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 eye disease specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association, Siegel Rare Neuroimmune Association and Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists)
- Expert care
- Expert lists: Autoimmune Association, Siegel Rare Neuroimmune Association, Global Autoimmune Institute
- 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 Autoimmune 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
It is an autoimmune condition. The immune system attacks the nerves, which causes inflammation and damage.
Also known as: devic disease; devic syndrome; devic's disease; devic's syndrome; neuromyelitis optica spectrum disorder; nmo
Patient organizations
- Autoimmune AssociationNeuromyelitis optica · United States
- Siegel Rare Neuroimmune AssociationNeuromyelitis optica · United States
- Global Autoimmune InstituteNeuromyelitis optica · United States
- Guthy-Jackson Charitable FoundationNeuromyelitis optica · United States
- National Multiple Sclerosis SocietyNeuromyelitis optica · United States
- The Sumaira FoundationNeuromyelitis optica · United States
You are more than your diagnosis
Perspectives from people navigating life with Neuromyelitis optica.
Explore research for Neuromyelitis optica
Explore actively recruiting Neuromyelitis optica studies with HealthSpark.
Find actively recruiting studies for Neuromyelitis optica with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Neuromyelitis optica studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Neuromyelitis optica
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Neuromyelitis optica experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.