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Lelainia’s NMO Story – 30 Years with the Wrong Treatment

Posted by: The Sumaira Foundation in NMO, ON, Patient, TM, Voices of NMO

I can trace my first NMO symptoms back to when I was just 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. Sometimes I’d be riding my bike when this would happen and my feet would suddenly fly off the pedals and I’d crash. 

All through high school, I struggled with crushing fatigue. I was so exhausted that I’d crash and burn by 8 pm every night. It felt like I just 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 where my right arm hurt from my collarbone to my fingertips. The neuropathic pain was so bad I couldn’t write or even stand to have my arm hanging down by my side. I spent 5 months walking around with my arm in a sling so I could function. I was sent for a bone scan to rule out bone cancer and while they didn’t find any evidence of cancer, they also didn’t have any answers. The doctors said “pinched nerve” and “growing pains” but by then I was old enough to know they had no clue and were probably wrong.

At 16, I started having episodes of intense vomiting that would recur every few years. I’d get so sick the blood vessels in my eyes would burst, which was pretty painful. After these attacks, I’d be completely wiped out; it would take me weeks to recover.

By my early 20’s I would lose feeling from my waist down for up to 5 months at a time and yet somehow, I was still able to walk. By this point, I was newly married with a baby and was concerned I had somehow had spinal cord damage from the epidural I’d had when I had a c-section to have my son. My family doctor brushed it off saying,

“Oh, it’s just a pinched nerve. Lose 10 pounds and you’ll feel better.”

In July 2007, I slipped and fell down a flight of wet stairs, striking my lower back when I landed. Within 24 hours, 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 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 anything in my hands became impossible. As an artist, this was utterly devastating. This loss of feeling in my arms and hands became permanent. On December 18th, 2007, my neurologist broke the news to me that I had multiple sclerosis and referred me to the local MS clinic.

In late January 2008, I had my first appointment at the MS clinic. It turns out my new neurologist 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 a 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. 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 again diagnosed with MS.

Over the course of the next 5 years, I’d 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 neurologist 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 that 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 simply 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 chemotherapy to try and beat down my immune system, in a bid 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. In January 2012, my right eye started feeling 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 had been smeared over my eyes. It completely freaked me out. I went in to see my neurologist who immediately sent me down the hall 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. 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 NMO specialist and asked if I could get a consultation. He agreed.

The day before my consultation, 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. While I tested negative for the IGg titre, I met all the other diagnostic criteria.

As of November 2012, I went off MS drugs and started on Imuran. After a year and a half on this drug, I developed sores in my mouth. I switched to Cellcept briefly and was so sick on it I couldn’t get out of bed for 14 weeks. Eventually I was diagnosed with rheumatoid arthritis and put on Rituxan to cover both that and NMO. The whole time, I was also taking steroids daily. 

In 2018, my rheumatologist switched my biologic and while it looked good on paper, it was an unmitigated disaster. I ended up with the worst NMO attack I’d ever had. I did 3 days of IV steroids, followed by being hospitalized for 12 days for PLEX (plasma exchange) to try and stop the optic neuritis attack. I caught the flu while in the hospital for the first time in my entire life and ended up on oxygen. I went home sicker than when I went in.

In 2019, I broke a rib and a few months later my pelvis on both sides. I also tore my Achilles. All of these injuries were not caused by accidents, but the direct result of severe osteoporosis from long term steroid use. My neurologist decided that we needed to find a way for me to get off the steroids and so she advocated for me to switch to a new biologic which is specifically for NMO. The hope is that it will be strong enough to hold the line and eliminate the need for daily steroids. If it works, I will start to taper off the steroids slowly to see if I actually can. It will be a long process.

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 to be alive. The way I cope with everything that’s happened to me is that I keep moving forward. I’ve found ways to leverage my experiences and skills to advocate for those living with NMO and MS:

If I have to live with this disease, then you can bet that I’m going to make it count for something. 

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