What is neuromyelitis optica spectrum disorder (NMOSD)?
Neuromyelitis optica spectrum disorder (NMOSD), sometimes called neuromyelitis optica, is a condition that affects nerves in the eyes and spinal cord. NMOSD damages the optic nerve, which carries signals from the eye to the brain, and to the spinal cord, which controls body movement and feeling.
NMOSD is an autoimmune disorder. This means the body's immune system mistakenly attacks healthy cells and proteins in the eyes and spinal cord.
One way the immune system protects the body is by making antibodies that recognize potentially harmful substances. Most people with NMOSD have antibodies that attack a harmless body substance called aquaporin-4. This attack triggers a strong immune response that damages support cells in the eye and spinal cord. These support cells normally provide a protective coating to nerves. Without protection, the nerves become damaged.
Types of NMOSD
There are two types of NMOSD:
- Relapsing NMOSD: Most people have this type. Symptoms come in episodes that last for days or months at a time, with long breaks of months or years between episodes.
- Monophasic NMOSD: This less common type happens only once. Symptoms last several months but don’t return.
Symptoms of NMOSD
Most people first have NMOSD symptoms either during childhood or in their 40s. Symptoms of NMOSD include:
Each episode of NMOSD can damage new areas of the spinal cord and brain, which can make symptoms worse. This can make daily tasks harder to perform.
Who is more likely to get neuromyelitis optica spectrum disorder?
NMOSD doesn’t typically run in families. But some groups of people are more likely to be affected by NMOSD:
- Women
- Black Americans
- People with other autoimmune disorders
How is neuromyelitis optica spectrum disorder diagnosed and treated?
Diagnosing NMOSD
Doctors use both symptoms and medical tests to diagnose NMOSD. Blood tests may help identify NMOSD in some people. Doctors also use imaging tests such as MRI (magnetic resonance imaging).
NMOSD has some of the same symptoms as multiple sclerosis (MS), another autoimmune disease that affects the nervous system. When diagnosing NMOSD, doctors may perform tests to help tell the difference between NMOSD and MS.
Learn more about neurological diagnostic tests and procedures.
Treating NMOSD
There’s no cure for NMOSD. But doctors can use several medicines to calm the immune system so it’s less likely to attack the eyes or spinal cord. Three medicines are specifically used to help prevent NMOSD episodes and have been approved by the U.S. Food and Drug Administration (FDA): eculizumab, inebilizumab, and satralizumab. Sometimes, doctors prescribe other medicines that quiet the immune system overall to help prevent NMOSD episodes: mycophenolate mofetil, rituximab, and azathioprine. People with NMOSD often take these medicines long-term.
Stronger, fast-acting medicines known as corticosteroids calm the immune system and may be prescribed for use during an NMOSD episode but not long-term. Plasma exchange is a procedure that filters blood to remove harmful antibodies and can also help treat symptoms during an NMOSD episode. Medicines and other therapies can help manage pain, stiffness, spasms, and bladder or bowel problems.
Some people with NMOSD may need assistive devices, physical therapy, or occupational therapy to help with walking, balance, and communication. Social workers and other health professionals can help people find rehabilitation care and support.
What are the latest updates on neuromyelitis optica spectrum disorder?
The National Institutes of Health (NIH), which includes NINDS, is the leading federal funder of research on the brain and nervous system, including disorders such as NMOSD. NIH supports new and innovative research to better understand, diagnose, and treat NMOSD.
A recent small clinical trial based on knowledge from NIH-funded research tested a treatment used for some cancers as a possible therapy for the autoimmune disease myasthenia gravis. This treatment, called CAR-T cell therapy, collects a person’s own immune cells that have been changed in the laboratory to better find and attack disease. The cells are then put back into the body to fight disease. Current NIH-funded research is collecting NMOSD samples to see if this type of CAR-T cell therapy may work for treating NMOSD.
Other NIH-funded research studies whether scar tissue that forms in the brain and spinal cord after an overactive immune response slows healing. Blocking this scar formation might help treat conditions like MS and NMOSD. For instance, one study looks at how a type of scarring that can happen in organs, called fibrosis, may contribute to conditions like NMOSD. This work may help scientists better understand what causes NMOSD to find better ways to prevent and treat symptoms.
For more information on research about NMOSD, check NIH RePORTER, a searchable database of current and past research projects funded by NIH and other federal agencies. RePORTER also has links to publications and resources from these projects.
For research articles and summaries on NMOSD, search PubMed, which contains citations from medical journals and other sites.
How can I or my loved one help improve care for people with neuromyelitis optica spectrum disorder?
Consider participating in a clinical trial so doctors and scientists can learn more about NMOSD and related disorders. Clinical research with human study participants helps researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.
All types of participants are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities. This helps make sure that study results apply to as many people as possible and that treatments will be safe and effective for everyone who will use them.
For information about participating in clinical research, visit the NINDS Clinical Trials site and NIH Clinical Research Trials and You. Learn about clinical trials currently looking for people with NMOSD at ClinicalTrials.gov, a searchable database of current and past clinical studies and research results.
Where can I find more information about neuromyelitis optica spectrum disorder?
Information may be available from the following sources: