Tecfidera - day 6 and exercise

Today I started day 6 of my Tecfidera treatment. Tomorrow will be my last half dose and, even though I consider myself very lucky not having any side effects yet, I'm a bit nervous about doubling the dose since I read that this is when a number of people start having their side effects.

In any case, the good thing about Tecfidera, as confirmed by my neurologist, is that it has a very short half life. This means that it gets out of your system very fast when stopped, if ever the side effects become unbearable.

Physical Activity

I started, in my last blog article to talk about multiple sclerosis, Tecfidera and physical activity. In my case, this involves running, cycling and swimming, since I train for triathlons.

First, let me say that I consider myself very lucky that my MS symptoms did not touch my motor abilities, at least directly. The symptoms I had during my last flare related to my vision, more specifically blurred and double vision. If it had incapacitated my legs or arms, this would have had a much bigger impact on my life, since triathlon training is what keeps me busy outside of work and family. Even my social life revolves around my training buddies.

After my last flare up got treated, it took a week or two to get all the blurriness gone, but even after a week or so, I felt relatively safe to ride my bicycle. The first couple of weeks, I also had the blurriness reappear during effort. On a run, I felt a bit of a blurry vision, starting 20 minutes in the run and had to concentrate a bit more if I had to run up a curb, for example. My neurologist said it was normal since MS symptoms usually reappear when the body temperature rises. But, everything should go back to normal once it cools down again. A couple of weeks later, the blurriness started going away completely, even when running.

Trail running

So my training buddies convinced me to register for a long distance trail run in September. It’s a 28k run through woods and mountains. Although not planned, it also happens to be a fundraiser for the Canadian MS Society: another incentive for registering. So I started training on trails, especially for my long runs, and I find my MS symptoms are making it hard. Let me explain.

Trail running means you need to constantly focus on the terrain: roots, rocks and such. Also, there’s a lot of ups and downs. When going up, it’s easier as you’re going slower and have time to evaluate and handle the obstacles. On flat or down, it’s another story as you’re going faster. Roots and rocks come at you much faster and it seems my vision is slow, not fast enough to get a good picture of what’s coming. It’s like if I was watching a cartoon drawn in a notebook and your were flipping through the pictures a bit slowly.

As a result, I fell a few times. Initially, I thought it was my lack of attention. But, running with friends, given it was happening to me much more often than all others combined and on the same terrain, I started suspecting the MS, and I’m pretty sure it’s an effect. That basically corroborates a test my neurologist had me do a couple of months ago. It’s called the “Visual Evoked Potential Test”. Basically, they put some electrodes on your scalp behind your head and flash an alternating checkerboard on a screen in front of you. They measure how long the visual signal takes to get through your eyes, brain, to the electrodes. That test was positive, in that it was slower than normal, confirming the MS.

If this is the case, the fact that, at my first trail race, I had a similar difficulty descending, fell and twisted my ankle a few times, probably confirms that I had MS in 2012.

I also find it particularly hard when I run marathons or longer triathlons. You might say: “dah, a marathon, that’s expected”. But, if I compare my marathon times and half marathon times, there is no comparison: my personal best marathon is twice my personal best half plus 35 minutes! That’s huge! If I remember the end of my last marathon, I remember a blurry vision and weakness and right after I finished the last 3 or 4 marathons and two half Ironman triathlons, I vomited.

With regards to trail running, I’ll have to take special precautions, go a bit slower and hope I’m lucky. And if I’m really lucky, I’m hoping the Tecfidera treatments help in reducing the vision problems. As for longer races, I’ll pay more attention to how my vision is, and other symptoms, to see if MS is the source for my problems.

A final note about the vision problems: I find that when there is a lot happening in my peripheral vision, I find it hard. Walking in a department store, or at Ikea is hard because there are so many things placed around you to grab your attention.