Myths and Misconceptions

When it comes to reading about rare diseases, knowing what is true and false might be harder than it seems. There are a lot of myths about neuromyelitis optica spectrum disorder (NMO or NMO). We want to set the record straight and give you the truth you deserve about NMO.

Myth: There is no treatment for

While there is not yet a cure for NMO, there are treatments available. Treatments include IV infusions, pills, or plasma (part of the blood) exchange. Research is continuing. New drugs approved by the U.S. Food and Drug Administration (FDA) show promise in preventing the damaging attacks of NMO. A number of clinical trials are underway to learn more about the disease and how to treat it.1

Myth: Everyone with NMO tests positive for specific markers

Antibodies are chemicals the immune system makes to kill germs. In some diseases, antibodies can also be harmful.

Most people with NMO have AQP4 antibodies (AQP4-IgG). About 1 in 4 people with NMO do not have AQP4 antibodies (AQP4-IgG). Some of these people have MOG antibodies (MOG-IgG).1

Antibodies targeting another protein called myelin oligodendrocyte glycoprotein (MOG) can also be present in NMO. They are believed to cause similar optic nerve or spinal cord attacks in MOG antibody NMO (MOG-IgG NMO). However, symptoms of this condition develop differently and need to be treated differently from those of AQP4 antibody NMO (AQP4-IgG NMO). Men and women are equally likely to get MOG antibody NMO (MOG-IgG NMO). Children have this disease more often than they have AQP4 antibody NMO (AQP4-IgG NMO).1-3

It is possible that MOG-IgG NMO and AQP4-IgG NMO will eventually be considered separate diseases. But for now, they are considered subtypes of NMO. 2,3

Some people with NMO may not have either AQP4 (AQP4-IgG) or MOG (MOG-IgG) antibodies. This adds to the complexity of diagnosing and treating the disease.1

In 2015, the International Panel for NMO Diagnosis (IPND) changed the diagnosis guidelines for NMO. These changes were based on a new understanding of the disease. The new standards for diagnosing NMO mean that those without AQP4 antibodies (AQP4-IgG) may still be diagnosed with the disease. This increases early diagnosis and gets treatment to those who may not have received it in the past.4

Myth: NMO is a type of multiple sclerosis (MS)

In the past, NMO was thought to bea type of MS. Now we know NMO is its own disease. Similarities between NMO and MS include:5,6

  • Both affect women much more than they affect men.
  • Both are autoimmune diseases, meaning the immune system cannot tell the difference between healthy cells and invaders like viruses, fungi, or bacteria. Because it cannot tell the difference, the body begins to attack and damage healthy cells.
  • The eye nerve (optic nerve) and spinal cord are impacted by NMO and are often also affected in MS.
  • Both are demyelinating diseases. Both damage the protective coating (myelin) of nerve cells, causing problems with nerve signals.

Differences between NMO and MS include:6

  • NMO symptoms are usually more severe and develop quicker than those of MS.
  • NMO can cause vomiting (throwing up) that can last for more than a month. This is not a symptom of MS.
  • Patterns of damage in the brain are different between the diseases.

Myth: Support is limited

If you or your loved one is diagnosed with NMO, you may feel that there is no support out there. This is not true. NMO is a rare disease, but support is available. The most prominent foundations that can help you find support include:7,8

Nonprofit foundations, social media groups, and local meetings are a few examples of this support. Support groups can help you or your loved one at any point in the NMO journey.

Myth: Symptoms are the same for everyone

While some symptoms of NMO are more common, symptoms vary from person to person.1

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Written by: Katie Murphy | Last reviewed: September 2021