NMOtion™ Blog

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The Story Of A Rare Bird

Around this time last year, my vision got blurry like someone had smeared Vaseline over my eyes and it felt like my right eye was being pulled out of the socket. The pain was somewhat like the bad migraines I have frequently and also similar to a sinus infection. I went through four episodes of this between February and July. Despite numerous attempts to get to the bottom of why this was happening, for some reason the obvious answer kept being overlooked. Finally in late July, I happened to mention it to my MS Specialist. She immediately referred me to a neuro ophthalmologist who ran a ton of tests and informed me that my problem was optic neuritis. In light of my medical history, he wanted to run an additional test, for NMO-Neuromyelitis Optica, a disease which very closely resembles MS.
I’d had an NMO test 5 years ago when I was in the process of being diagnosed with MS and it had come back negative. While I was waiting on the results of this latest test, I learned through the MS Society that I had the opportunity to learn more about NMO by attending a patient information day out at UBC. I signed up and went.

Two weeks later, my NMO test results were in. I’d tested negative again. You would think that would be the end of it, but no. The problem is that the NMO test is not foolproof. Forty percent of people who get a negative result test as a false negative. You can test negative and still have NMO. Fortunately, thanks to attending the NMO patient information day, I was able to arrange to get a consult with an NMO expert, one of two in all of Canada.

I met with the NMO specialist. After an extensive neuro exam, a review of my MRIs, the written reports that went with them and the results from all the tests I had just had done for the optic neuritis, my diagnosis was amended to NMO. When I heard the words, I was in shock. I’d suspected something wasn’t right with my MS diagnosis for some time, but getting confirmation that my gut feeling was right all along was still hard to believe. I was told that I am lucky to be alive and as able-bodied as I still am. Talk about a reality check! I don’t think it’s fully sunk in yet.

So what is NMO and what’s the difference between it and MS? The Mayo Clinic* explains: “Neuromyelitis optica (NMO), also called Devic’s disease, resembles Multiple Sclerosis in many ways. Both diseases affect the central nervous system. In both diseases, the immune system reacts against the body in what are often termed episodes or attacks. These episodes cause inflammation and destruction of cells. In NMO, the primary targets are optic nerves and the spinal cord, which are also commonly affected in MS.

There are a number of differences between NMO and MS. Patients with NMO often have severe, rapidly worsening symptoms. When the optic nerves are affected, blindness can occur. Likewise, when spinal cord cells are damaged in NMO, patients may experience paralysis, loss of bladder and bowel control and, occasionally, breathing difficulties that can prove to be fatal. In MS, initial episodes usually are mild and not life threatening. Over time, patients with MS may develop disabilities including paralysis (most typically in the legs), but permanent disability often tends to develop gradually and not as a result of sudden attacks as it does in NMO.

Patients with NMO usually have normal MRI brain scans early in the course of the disease, while the brain scans of patients with MS may show abnormalities. About 80 percent of patients with NMO have distinct, long lesions in the spinal cord on MRI that aren’t present in patients with MS.

The treatment options for these two illnesses also are quite different. MS is initially treated with immunomodulating medications that work by reducing inflammation. These medications don’t help patients with NMO and may actually cause more severe attacks than would otherwise occur. Patients with NMO respond to immunosuppressive medications, to prevent future attacks. Plasma exchange — where antibodies are removed from the bloodstream — is successfully used to treat patients who don’t respond to initial therapies.”

Five in one hundred thousand people have NMO, making me what a friend of mine refers to as a “rare bird”. I wanted to share my amended diagnosis with all of you because it is quite possible there are more of us rare birds out there in the MS community, who are completely unaware that NMO exists. While NMO is treated differently than MS, the neurologists I’ve spoken to believe it’s a variant of MS.

I lived under the diagnosis of MS and undergone extensive treatment over the course of the last 5 years. MS is a part of my story-nothing’s going to change that. I will continue writing here, working with the MS Society in serving the MS community and raising awareness for both MS and NMO. People with NMO may be rare birds, but when it comes to demyelinating diseases, we’re all in this together.

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