Is There a Way to Predict Disability Progression and Outcomes?
SPOILER ALERT: Yes, there are some ways to predict disease progression, sort-a, kind-a.
Sounds wishy-washy, doesn’t it? Happens every time we try to draw black-and-white distinctions from a medical condition that has been painted with broad gray strokes for decades. Progressively more sophisticated instruments are helping us discover the nuances of what makes Multiple Sclerosis waken, throw tantrums, cripple, maim and kill before it even reaches its 10th birthday. But as so often happens, researchers can cruise down a country lane that seems familiar only to get distracted and lured into a rabbit hole. And yes, I just used a baby serial killer metaphor followed by a felony abduction fantasy to describe MS medical research. It's part science fiction (“Attack of the 50-Ft Baby”), and part film noir (“A Kiss Before Tripping and Falling”)—and exactly how this thing seems to play out. Case in point: At first blush, a study result like the one below feels counter-intuitive to both our own experience and those of our peers. Let’s take a look.
It’s About the SPMS…
In a 2012 study, it was the time it took to reach secondary progression in multiple sclerosis (MS), not the frequency of early inflammatory attacks that was the strongest predictor of severe disability later on, researchers found.1
Before you bust an artery, I urge you to read the entire reference article (click on “View References” posted at the bottom of this page) and then reread it several more times like I did; you still might struggle against the claims it makes, again, like I did, but try to keep at it. On the first reading it seems to say nothing that happens during the inflammatory phase counts towards how severely disabled we will finally become. That felt wrong to me, considering how each of my very few flare-ups over the past 16 years left me with more permanent disability than the previous one. Not to mention the flare at year ten suddenly pushing me up the DSS from a 3 (no mobility aid needed) to a 5-6 (must use a cane). And not only for me; how many hundreds of you out there share some version of this? In a pig’s eye, you say? Of course having active RRMS is going to impact the ultimate severity of our disability, you say? Yep, I grumbled, too.
Nevertheless, on second, third, and fourth readings, the humble logic of this science experiment pushed its way in front of my eyes. The study doesn’t dismiss the variations of our flare outcomes. Rather, it states that severe late disability outcomes more uniformly corresponded with later progression to SPMS regardless of whether a patient had one, two or three relapses during the first two years after diagnosis. Contrast that with the importance of reducing the frequency of relapses being the main feature of all our disease-modifying therapies in order for us to avoid permanent impairment and to delay progression. According to the leads in this study, DMT trials are more in harmony with this 2012 study than not.
This 2012 study that followed about 700 patients over 16-28 years also states a significant percentage of trial subjects (38%) never reached the secondary progressive stage, which greatly improved their odds of never reaching a 6 and an 8 on the DSS. Perhaps most significant for we patients, the study might be proof of the vital importance that our disease-modifying therapies delay, or better yet, eliminate progression to SPMS to improve our chances of not becoming dependent on mobility aids and home health care due to MS in our later years. This is a long-winded way of noting the sometimes harmonious discourse between researchers about the importance of keeping us in the inflammatory stage as long as possible.
There are other kinds of predictors as well, which I will cover in a follow-up article. I hope you found this study interesting enough to ponder as you roll along your own MS journey.
Does your employer provide workplace accommodations due to your MS?