About Lelainia

In July of 2007, I slipped and fell down a flight of wet stairs, striking my lower back when I landed. Within 2 days, I lost feeling from my waist down. I had an X-ray, which came back clean. A week later, I couldn’t feel from my ribs down. A second X-ray also came back clean. By the third week, the numbness had reached up to my collarbone and I was now having trouble breathing. I was immediately referred to a neurologist who knew something was really wrong. He scheduled me for a number of tests. (I had an MRI, Visual Evoked Potential, a large panel of blood tests and a spinal tap.) Before all the tests were completed, I had developed transverse myelitis and lost all the feeling in my arms & hands. I lost the ability to do small motor skills-simple things like buttoning buttons, undoing zippers, putting a key in the lock or holding onto anything in my hands became impossible. As an artist, this was utterly devastating. This loss of feeling in my arms and hands would become permanent. On December 18th, 2007, my neuro broke the news to me that I had MS and referred me to the local MS clinic.

In late January, 2008, I was had my first appointment. It turns out the MS specialist not only felt it was necessary to repeat all the testing I’d just been through (everything, but the spinal tap, thank goodness!) but also wanted me to have testing done for some rare disease called NMO. When she explained what NMO was, I tried to talk her out of it-sure, I had long sections of spinal cord lesions, but I’d never had optic neuritis, one of the hallmarks of NMO. Also, NMO had the potential to be deadly and there’s no way I wanted that diagnosis! Finally she wore me down and I agreed to have the blood work done, convinced it was a waste of time and money. (The test for NMO was only 2 years old at the time and not available in Canada, so my blood had to be sent to the Mayo clinic in the US.) The test came back negative and I was diagnosed with MS.

Over the course of the next 5 years, I would undergo numerous treatments to try and get what they thought was MS into remission. I started with IVIG, which was a disaster. After only 2 treatments, I developed a rare side effect, aseptic meningitis and had excruciating, skull crushing pain for about a week before I finally gave in and saw my neuro who was horrified and treated me immediately with a giant pulse of steroids. I had to stop the IVIG treatments, so they tried putting me on Rebif. I am extremely drug sensitive and ended up so sick I was unable to get out of bed. (And that was just on ½ the normal dose of the drug.) At this time, I also developed severe pain at the base of my skull that refused to go away. They took me off Rebif and switched me to Copaxone. I began seeing a pain specialist for freezing shots in the base of my skull every 2 weeks and had to go on morphine just to function. I cycled through a whole host of migraine drugs (which included some major allergic reactions to those drugs) and a minor surgery on the nerves but nothing helped. Eventually, it was decided I should have chemo to try and beat down my immune system to try and get into remission.

Chemo was hell. After 4 treatments over 5 months, I wasn’t improving, so they discontinued treatment. Everyone had run out of ideas. I stayed on the Copaxone and had IV steroids as needed. I never did get into remission. In January 2012, my right eye started being extremely painful. I thought it was a bad sinus infection. It felt like my eyeball was being pulled out of its socket. I had stretches of time where it was hard to see properly. I thought if I could just blink hard enough, it would go away. It didn’t. I went to see my ophthalmologist. She was surprised to see me just 6 months since my last appointment. I explained what was happening and while she could tell my vision had changed drastically, she said my optic nerve was fine. She thought I should be screened for diabetes and gave me a prescription for bifocals. My diabetes screening came back negative. I got the glasses.

The glasses didn’t really help most of the time. One day, I got on the bus and in the 5 minute ride to the library, lost the vision in both eyes. (It was like Vaseline was smeared over my eyes.) It completely freaked me out. It was the fourth attack I’d had in 6 months. I went in to see my MS specialist who sent me straight to the neuro ophthalmologist. He could clearly see that I’d had optic neuritis. He asked if I’d ever been tested for NMO and I said I had, but tested negative. He wanted to test me again, absolutely certain that I’d test positive this time.

While I was waiting for the results, the MS Society sent out an email saying that there was going to be an NMO Patient Information Day at UBC. I decided I should go, seeing as the whole NMO thing had popped up too many times for me not to learn more about it. While I was sitting there listening to the presentations, I kept hearing about symptoms that sounded exactly like mine. Finally, at the break, I approached the UBC NMO specialist and asked if I could get a consult. He agreed.

The day before my consult, I saw the neuro ophthalmologist for my NMO test results. They were negative. Again. He told me he was sorry, he was sure that I would have tested positive and that he couldn’t justify asking the government to pay for any more NMO tests for me so I’d just have to live with the MS diagnosis. This is where advocating for myself was vitally important: the next day, I went to see the NMO specialist and spent 4 hours at his clinic while they did a complete medical history, a neuro work up and went over all my MRIs and test results. At the end of it all, they were certain that I had NMO. I am one of those people who has so far tested as a false negative.

As of November 2012, I went off MS drugs and started on Imuran. So far, after a year and a half on this drug, my immune system is not responding as they’d hoped. I am not sure how much longer they will continue trying me on this drug before they decide to have me switch to something else. Since my NMO diagnosis, I’ve had three attacks and two steroid infusions. The pain at the base of my skull continues to be a major issue. I deal with a number of other ongoing NMO symptoms on a daily basis and new ones crop up all the time. Looking back, I know that my NMO symptoms began when I was 12, with my legs “shutting off” long enough for me to fall down a flight of stairs or causing my feet to fly off my bike pedals when I was cycling and I’d crash. By 15, I’d developed neuropathy in my right arm bad enough that I’d go around for months with it in a sling, completely unable to use it. It was serious enough that my doctors screened me for bone cancer. It took 30 years to figure out I have NMO and that was 30 years with either no treatment or the wrong treatment while I continued to have attacks. I consider myself lucky that I am still alive and that I am still fairly able-bodied. Now that we know what it is and how to treat it, I am hopeful that at some point, things will improve. Meanwhile, I soldier on.