For NMOSD Awareness Month, Let’s Separate Fact From Fiction

Lelainia Lloyd avatar

by Lelainia Lloyd |

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NMO awareness bracelets and pin. (Photo by Lelainia Lloyd)

In the United States, March is Multiple Sclerosis (MS) Awareness Month, but did you know it’s also Neuromyelitis Optica (NMO) Awareness Month?

NMO patients are most frequently misdiagnosed with MS, as these two diseases can look quite similar, so awareness is key. Let’s separate some facts from fiction.

“NMO is a form of MS.”

FICTION. For a long time, NMO was thought to be a type of MS and was referred to as “optic-spinal MS” or “Asian MS,” as this disease has a higher prevalence in those of Asian descent

“You can be diagnosed with both NMO and MS.”

FICTION. These are two distinct diseases that take different courses and require different treatments. 

“NMO was recently discovered.”

FICTION. NMO used to be known as Devic’s disease, named after French neurologist Eugène Devic who first described NMO in 1894. Eventually the name was changed to reflect the condition, and more recently, “spectrum disorder” was added. Most patients use “NMO” for short. 

“A test can determine if you have NMO.”

FACT. An NMO-IgG blood test measures the level of aquaporin-4 antibodies in the blood. Aquaporin-4 is a water-channel protein in the central nervous system, particularly the brain and spinal cord, which is targeted and attacked by the immune system in patients with NMO.

“You do not need a positive NMO-IgG blood test to be diagnosed with NMO.”

FACT. Most NMO-IgG tests list a 5-10% chance of a false-positive result and a 20-30% chance of a false-negative. Due to the high percentage of false negatives, some patients with NMO have been misdiagnosed — often with MS. Once this was discovered, the diagnostic criteria was revised. Patients no longer need a positive test in order to be diagnosed if they meet these other criteria

“NMO is a rare disease.”

FACT. In Canada, there are between 1,000 and 3,000 NMO patients while there are about 90,000 MS patients. While we often refer to MS patients as “zebras,” NMO patients are “unicorns” because we are so rare.

An old adage taught in medical school goes, “When you hear hoofbeats, look for horses, not zebras.” It means that the simpler, more common diagnosis is often the answer. In most cases, if physicians are not looking for zebras, then they are definitely not looking for unicorns!

“NMO attacks are just like MS attacks.”

FICTION. NMO attacks happen swiftly and are often more severe than MS attacks. An NMO attack can include inflammation of the optic nerve (optic neuritis), which can cause permanent damage resulting in blindness, and inflammation of the spinal cord, which can cause loss of sensation, paralysis, loss of bowel and bladder control, and even death. Attacks may also include vomiting and hiccups. Left untreated, NMO can be fatal.

“NMO treatments are the same as MS treatments.”

FICTION. While MS patients are treated with immunomodulatory therapies, NMO patients are treated with immunosuppressants, which help prevent attacks. If you have NMO and are misdiagnosed with MS, being on MS treatments can actually make you worse because they do not target the immune system the right way. Getting the right diagnosis is crucial and quite literally a matter of life and death. 

As you can see, it’s important to know the facts and obtain a correct diagnosis. NMO patients need to get the proper treatments to prevent life-altering and even life-threatening attacks. 

To learn more about NMO, please visit:


Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.


Sara M. avatar

Sara M.

Thank you so much for this information!!! I am pretty sure I have been misdiagnosed with MS after a false negative test for NMO. My symptoms have always fit better with NMO than MS and the MS treatment is not helping, but my blood test for NMO was negative so we've been treating it like MS. I went blind in one eye back in 2009 and only have lesions in my spine, none in my brain. I am going to bring this information to my neurologist today and maybe start more effective treatment soon! Thanks again!

Lelainia Lloyd avatar

Lelainia Lloyd

Happy I can help. The Guthy-Jackson Foundation has a free app for NMO both you & your neuro can download for Apple or android with a ton of info. You do not need a positive Aquaporin test to be diagnosed with NMO. I am seronegative. If you need help/info, you can reach me at Lelainia (at) Sumaira foundation (dot) org
Happy to help if I can. Having the proper diagnosis is critical-they are NOT the same disease and being on MS drugs if you have NMO can actually make things worse.


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