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Do I have MS or Neuromyelitis Optica?

By Matt Cavallo

In a previous article, I had been suffering from hiccups that lasted for more than two weeks. My neurologist was concerned and had me tested for neuromyelitis optica. I started researching NMO and was concerned with what I learned.

NMO is often misdiagnosed as MS. The characteristic symptoms of NMO are optic neuritis and myelitis, both of which are symptoms I have had. I had transverse myelitis, or the inflammation of the spinal cord, which caused me to lose my ability to walk back in the spring of 2005. Six months later, I went blind in my right eye due to optic neuritis, or the inflammation of the optic nerve. 

At the time, the two neurologic events of TM and ON led to a diagnosis of relapsing remitting multiple sclerosis. Fifteen years later, I was learning I might have been misdiagnosed this entire time. This was shocking to me on many levels. I mean for the last 15 years, I have dedicated my life to MS, and as it turns out, I may have never had it to begin with.

The more I learned about NMO, the more it was looking like I was misdiagnosed. NMO is when the body’s immune system reacts against the spine and optic nerve, and sometimes the brain. It can cause blindness and paralysis, spasms, bladder and bowel issues and uncontrollable vomiting or hiccups. 

NMO is also known as Devic’s disease after the French neurologist, Eugene Devic, who discovered the condition in 1894. NMO flare-ups can be treated with intravenous steroids and there are treatments available for those living with NMO, so if I was newly diagnosed with NMO there would not be too much of a change from a treatment perspective than what I am used to with MS. 

The process for diagnosing NMO is also similar to MS. Diagnosis includes a neurologic exam, MRI studies, and a spinal tap. The key distinction is that a blood test is required of NMO to detect the NMO-IgG and MOG-IgG biomarkers that may exist in your blood. My neurologist ordered the blood test and a phlebotomist, or a person who can draw blood, came to my house. The process of collecting my blood took about five minutes, but I had to wait for the results. Waiting is always the unnerving part.

In the meantime, I read every article I could find on NMO. The more I read, the more I thought about what a new diagnosis of NMO would mean for me. Was I no longer going to be living with MS, the most common neurological disorder, and now going to be a person living with NMO, a rare disease? Was that going to require a change of treatment or lifestyle? What did it mean for my future? I started to feel all of the fears and anxiety that I experienced during my initial diagnosis of MS all over again.

It turns out my test for NMO was negative. It was a huge relief and it was good to rule out having the rare neurological disorder. In addition to the blood test, I also had an MRI that showed no new disease activity. As it turns out, I still have relapsing remitting multiple sclerosis.