My NMOSD Relapses Are Slow Burners

My first neuromyelitis optica spectrum disorder (NMOSD) attack seemed to happen rapidly and dramatically. Although I had known something was wrong for months, it was only 48 hours from realizing I couldn’t pee to chest-down paralysis. I always expected that my relapses would be the same. I’m sure some people do experience sudden relapses, but mine are more like slow burners.

My first NMOSD relapse

My first relapse only involved my eyes. I’d had optic neuritis (ON) in both eyes with my first attack, so recognized what was happening pretty quickly. Like before, it started with a deep, heavy ache behind my eyes. Looking up or down intensified the pain. I was on high alert, expecting my vision to start disappearing quickly like before. However, it was three or four days until I noticed anything wrong.

I noticed a tiny, fuzzy grey spot right in the middle of my vision. It was no bigger than the head of a pin. Looking around and blinking, I tried to clear it in case it was a harmless floater or something like that. It didn’t disappear. An hour later, it was 10 times the size. This is when I knew something was definitely wrong.

Vision loss

When I spoke to my neurologist, she wasn’t convinced I was relapsing. She said she’d have expected the vision loss to come much sooner after the eye ache began. Regardless, she called me in and started me on a steroid drip. It cleared the worst of the eye ache and vision loss as expected, and so my neurologist confirmed a relapse.

Nerve issues

A couple of years after that I had my first confirmed transverse myelitis attack. Again, it started slowly. I had some very subtle tingling in one of my legs, but as anyone with NMOSD knows, we can experience all kinds of nerve-related residual symptoms from previous attacks. I brushed it off. Over the next couple of weeks I started having more frequent spasms. Then, the tingling turned to reduced sensation and I started to get suspicious.

I called my neurologist and we had a lengthy discussion about my symptoms but again, they didn’t follow a pattern she recognized. We were both happy to check for any infections that might have been causing a pseudo-relapse, and wait and see what happened over the next couple of days. Well, we didn’t get that long because the following day my leg started to give way. With the onset of significant weakness, I was rushed into hospital.

NMOSD treatment

My neurologist started me on steroids right away while waiting for the result of an MRI. The MRI confirmed inflammation on my spinal cord. After several days of steroids I saw no improvement. I was transferred to a larger hospital for plasmapheresis treatment that was very successful.

My relapses are atypical

During my recovery, I had a chat with my neurologist who acknowledged that my relapses have an atypical, ‘rumbling’ onset. I describe them as 'slow burners.' We agreed that we’ll keep this in mind for the future. It’s important as patients that we recognize any patterns that may appear, because they can be helpful in getting timely treatment. Also, it’s important that we can have these open discussions with our health professionals.

I’m now much more aware of symptoms that come and go and less likely to dismiss them. Interestingly, after connecting with more people with NMOSD, I’ve found that they have a similar onset to relapses, too. Sharing our experiences is so important and can help us all in our management of NMOSD.