Neuromyelitis Optica (2024)

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What is neuromyelitis optica?

Neuromyelitis optica (NMO) is an autoimmune disease of the central nervous system (CNS) that mainly affects the optic nerves and spinal cord. It is sometimes referred to as NMO spectrum disorder or NMOSD.

In NMO, the body's immune system mistakenly attacks healthy cells and proteins in the body, most often those in the spinal cord and eyes. Symptoms include:

  • Loss of bladder and bowel control
  • Severe nausea and vomiting, with hiccups from involvement of a part of the brain that controls vomiting

    The disease is caused by abnormal autoantibodies that bind (attach) to a protein called aquaporin-4, activating other parts of the immune system and causing inflammation and damage to cells. This also results in the loss of myelin (the fatty substance that acts as insulation around nerve fibers and helps nerve signals move from cell to cell) in the brain and spinal cord.

    NMO is different from multiple sclerosis (MS). Attacks are usually more severe in NMO than in MS, and NMO is treated differently than MS. Most individuals with NMO experience clusters of attacks days to months or years apart, followed by partial recovery during periods of remission. Women are more often affected by NMO than men. African Americans are at greater risk of the disease. The onset of NMO varies from childhood to adulthood, with two peaks, one in childhood and the other in adults in their 40s.

    There is no cure for NMO. The U.S. Food and Drug Administration (FDA) has approved three drug treatments (eculizumab, inebilizumab-cdon, and satralizumab-mwge) which can reduce the risk of relapses in adults who are anti-aquaporin-4 antibody positive.

    NMO relapses and attacks are often treated with corticosteroid drugs and plasma exchange (also called plasmapheresis, a process used to remove harmful antibodies from the bloodstream). Immunosuppressvie drugs used to prevent attacks include mycophenolate mofetil, rituximab, and azathioprine. Pain, stiffness, muscle spasms, and bladder and bowel control problems can be managed with medications and therapies.

    Individuals with major disability may require physical and occupational therapy, along with social services professionals to address complex rehabilitation needs. Most individuals with NMO have an unpredictable, relapsing course of disease with attacks occurring months or years apart. Disability is cumulative, the result of each attack damaging new areas of the central nervous system.

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    Learn About Clinical Trials

    Clinical trials are studies that allow us to learn more about disorders and improve care. They can help connect patients with new and upcoming treatment options.

    How can I or my loved one help improve care for people with neuromyelitis optica?

    Consider participating in a clinical trial so clinicians and scientists can learn more about NMO and related disorders. Clinical research uses human volunteers to help researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.

    All types of volunteers are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities to ensure 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 NIH Clinical Research Trials and You. Learn about clinical trials currently looking for people with NMO at Clinicaltrials.gov.

    Where can I find more information about neuromyelitis optica?

    Information may be available from the following resources:

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    Order publications from the NINDS Catalog

    The NINDS Publication Catalog offers printed materials on neurological disorders for patients, health professionals, and the general public. All materials are free of charge, and a downloadable PDF version is also available for most publications.

    Neuromyelitis Optica (2024)

    FAQs

    What is the life expectancy of a person with NMO? ›

    The average life expectancy for patients with NMO is approximately 5 years following the initial attack if left untreated; however, with treatment, outcomes are substantially improved. Conversely, MS generally does not affect life expectancy, highlighting the distinctions between these two autoimmune disorders.

    What triggers neuromyelitis optica? ›

    NMO is an autoimmune condition. This means the body's immune system reacts abnormally and attacks healthy tissues, causing the symptoms of NMO. NMO is usually not inherited, but some people with NMO may have a history of autoimmune disorders in the family and may have another autoimmune condition themselves.

    Can NMO go away on its own? ›

    It is not known if the body can heal damage to the spinal cord, optic nerves or brain caused by NMO. It is possible that by preventing relapses, these tissues may repair themselves over time. However, it is also possible that tissue caused by NMO may be irreversible.

    What is the prognosis for neuromyelitis optica NMO? ›

    The five-year survival rate for this condition is between 91% and 98%. For people with NMO who experience multiple attacks, this condition is more likely to cause the loss of certain abilities, such as vision and movement.

    What is the diet for neuromyelitis optica? ›

    A NMO disease diet includes: eating a variety of fruits, vegetables, whole grains, and lean protein. limiting your intake of foods that are high in saturated fats or sugar, such as processed meats, pastries, and sweets. drinking 6 to 8 cups of water or other sugar-free fluids per day.

    What is the cause of death in NMO patients? ›

    After a median 11-year follow-up, 11 (7%) of 158 Argentinean NMOSD patients in this cohort died. Almost half of deaths were related to NMOSD relapses, particularly extensive cervical myelitis with respiratory failure and respiratory infections were the second most frequent cause of death.

    Does NMO qualify for disability? ›

    As NMO meets the criteria, so NMO qualifies as a disability. Neuromyelitis optica or NMO qualifies for severe disability because it affects the central nervous system, causing blindness and paralysis.

    Is NMO worse than MS? ›

    In MS, individual episodes are usually mild. Over time, they may or may not cause progressive disability. In NMO spectrum disorder, episodes tend to be severe, so early diagnosis is critical. NMO spectrum disorder attacks can have devastating, irreversible effects on how a person can function.

    Is neuromyelitis optica a form of MS? ›

    Neuromyelitis optica is often misdiagnosed as multiple sclerosis (MS) or seen as a type of MS . But NMO is a different condition. Neuromyelitis optica can cause blindness in one or both eyes, weakness or paralysis in the legs or arms, and painful spasms.

    What age does neuromyelitis optica start? ›

    The onset of NMO varies from childhood to adulthood, with two peaks, one in childhood and the other in adults in their 40s. Women are more often affected than men.

    What causes NMO flare-ups? ›

    With NMO, your immune system attacks a substance in your body called myelin—the insulation around your nerves. Specifically, the myelin cells in the spinal cord and optic nerves are attacked. Usually, people with NMO have flare-ups of the disease that may strike months or years apart.

    Is NMO a terminal? ›

    NMO is also known as Devic's disease or neuromyelitis optica spectrum disorder (NMOSD). Patients with neuromyelitis optica (NMO) patients have a 91% to 98% five-year survival rate.

    How quickly does NMO progress? ›

    Generally, NMO symptoms begin rapidly. After the initial attack, NMO follows an unpredictable course, and time to remission can vary. Recurring episodes of optic neuritis and/or transverse myelitis can be weeks to months in duration, and in some very unusual cases can last years.

    Can I live a normal life with NMO? ›

    Neuromyelitis optica (NMO) can affect your vision, your muscles, and your emotions. It sometimes leads to lasting symptoms or disabilities. But certain devices, lifestyle changes, and therapies can help you live with NMO as well as you can.

    What is the new treatment for neuromyelitis optica? ›

    Further, Ultomiris is approved in the US, EU and Japan for the treatment of certain adults with neuromyelitis optica spectrum disorder (NMOSD).

    What is the best treatment for NMO? ›

    NMO relapses and attacks are often treated with corticosteroid drugs and plasma exchange (also called plasmapheresis, a process used to remove harmful antibodies from the bloodstream).

    Does exercise help NMO? ›

    Reduces your risk of falling. For those with NMO, falls can happen because of problems with muscle strength and balance. Exercise helps to improve strength and balance, decreasing the risk of falling.

    What supplements are good for neuromyelitis optica? ›

    Vitamin D may be a key mediator in NMO, an autoimmune disease which demyelinates the optic nerve, brain stem and spinal cord.

    How rare is neuromyelitis optica? ›

    NMOSD occurs in individuals of all races. The prevalence of NMOSD is approximately 1-10 per 100,000 individuals and seems to be similar worldwide, although somewhat higher rates have been reported in countries with a higher proportion of individuals of African ancestry.

    Is NMO more serious than MS? ›

    So MS normally comes and goes-- we call that relapse and remit-- versus NMO, which usually comes and then it just keeps getting worse. So NMO is a way more severe disease than MS, even though superficially they look the same.

    Is NMO a progressive disease? ›

    Living with neuromyelitis optica

    Disability from NMO may become worse over time. Most people with NMO develop weakness in their arms and legs.

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