Day 5 of 31
Lelainia Lloyd is a patient advocate in Canada. These are her words:
March is Neuromyelitis Optica (NMO) awareness month. NMO is a rare disease that is often mistaken for MS. Many NMO patients are initially misdiagnosed with MS. For a long time, NMO was referred to as “Spinal-Optical MS” or “Asian MS” as this disease has a high prevalence in those of Asian descent. It also used to be referred to as “Devic’s disease,” after French neurologist Eugène Devic first described it in 1894.
There are only about 1000–3000 NMO patients as compared to 90,000 MS patients in Canada. While we often refer to MS patients as “zebras,” NMO patients are referred to as “unicorns” because we are so rare.
Unlike MS, there is a specific test to determine if a patient has NMO, called an NMO-IgG titer test which is a blood test that measures the level of Aquaporin 4 antibodies. A positive test is 100% accurate for NMO, but a negative test has a 30%–40% chance of being a false negative. As a result, some patients with NMO have been misdiagnosed with MS. Once this false-negative result was discovered, the diagnostic criteria were revised. Patients no longer need a positive titer if they meet these other criteria.
NMO attacks happen swiftly and are more severe than MS attacks. An NMO attack can include inflammation of the optic nerve, 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. Left untreated, NMO is fatal.
Up until recently, there were only three drugs used to treat NMO, all of which were for off-label use. Now we have three new therapies specifically for our disease. These therapies work to help prevent attacks.
While MS patients are treated with immunomodulatory therapies, NMO patients are treated with immunosuppressants. If you have NMO and are misdiagnosed with MS, being on MS drugs will actually make you worse because they are not targeting the immune system in the right way. Getting the right diagnosis is a matter of life or death.
Multiple Sclerosis News Today’s 31 Days of MS campaign will publish one story per day for Multiple Sclerosis Awareness Month in March. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofMS, or go here to see the full series.
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