I Saved My Own Life After Being Repeatedly Misdiagnosed
I can trace my first neuromyelitis optica (NMO) symptoms to when I was 12 years old. I’d be walking down a flight of stairs, and for a split second it was as if a switch had been thrown, cutting off communication between my brain and my legs, and I’d fall down the stairs. While I didn’t understand why it was happening, I knew something was seriously wrong.
Throughout high school, I struggled with soul-crushing fatigue. While most young people my age were out having a good time, I’d crash and burn by 8 p.m. every night. I never got enough sleep, and I’d wake up beyond tired every single day.
When I was 15, I went through an extended period of time when my right arm hurt, from my collarbone to my fingertips. The neuropathic pain was excruciating. I spent five months with my arm in a sling. My doctors said it was due to a “pinched nerve” and “growing pains,” but by then I was old enough to know they had no idea what was going on and were probably wrong.
By my early 20s, I lost feeling from my waist down. When I went to my family doctor to voice my concerns, she brushed them off by saying, “Oh, it’s just a pinched nerve. Lose 10 pounds and you’ll feel better.”
In the summer of 2007, I fell down a flight of wet stairs, striking my lower back. Within 24 hours, I lost feeling from my waist down. A week later, I lost feeling from my ribs down. By the third week, the numbness had reached up to my collarbone, and I started having trouble breathing.
I was immediately referred to a neurologist, who scheduled me for a number of tests. But before they were completed, I developed transverse myelitis, a rare inflammatory disease, and lost all feeling in my arms and hands. Small motor skills became impossible. As an artist, this was utterly devastating.
In December of that year, my neurologist broke the news to me that I had multiple sclerosis (MS), and I was referred to a local MS clinic.
At my first appointment at the clinic, my new neurologist felt it was necessary for me to be tested for a rare disease called neuromyelitis optica. The test for NMO was only two years old at the time and had to be sent to the Mayo Clinic in the U.S. I tested negative, and as a result, was diagnosed with MS.
Over the next five years, I cycled through numerous MS drugs, often ending up so sick with side effects that I was unable to get out of bed. Eventually, I had chemotherapy in a bid for remission. Chemo was hell. After four treatments over five months, I wasn’t improving. Everyone had run out of ideas.
One day in January 2012, my right eyeball felt like it was being pulled out of its socket. My vision was blurry. I thought if I could just blink hard enough, it would go away. It didn’t.
On my way to the local library for a meeting, I lost vision in both eyes. It was as if Vaseline had been smeared all over them. Thank goodness I was on a bus!
I sat through the meeting quietly freaking out and then called my husband to come pick me up. He could hear the edge of panic in my voice, which was unlike me, and he came to my rescue. The neuro-ophthalmologist examined my eyes and discovered I had optic neuritis. He retested me for NMO, certain that I’d now have a positive test.
While I was waiting for the results, I discovered there was going to be an NMO patient information day, and I decided to go. It was a decision that ultimately saved my life. I heard patients describing symptoms that sounded exactly like mine. I approached the NMO specialist and asked for a consultation. He agreed.
My NMO test results came back negative again, and I was told I’d just have to live with the MS diagnosis. This is where advocating for myself was vitally important: The next day, I spent four hours in a consultation, and at the end of it, the specialist was certain I had NMO.
While I had tested negative for the IgG titer, I met all the other diagnostic criteria. (It has since been discovered that there’s a high false negative rate when testing for NMO, which led to the diagnostic criteria being revised.)
It took 30 years to be diagnosed with NMO, and that was 30 years with either no treatment or the wrong treatment while I continued to have attacks. Left untreated, NMO is 100% fatal. I consider myself lucky to be alive.
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.
So much like me, the full name of mine is Transverse Myelitis Neuro Sarcoidosis . I could write the same story and it would have the same issues of diagnosis. Then I found the team that knew what was going on. This was a change in my life.
It’s amazing how many of these autoimmune diseases mimic one another. It makes diagnosing correctly a challenge. So important to have specialists who know what they’re looking at! Thanks for sharing your story with me Rick. It’s always an honour to hear someone’s story.