A Multiple Sclerosis Treatment Analogy

You know I love a good analogy (exhibit A). I’m a member of a couple of MS support groups on Facebook. Recently, another member expressed that she felt that she had failed because after treating her MS naturally (via a combination of diet, exercise, nutritional supplements, and other alternative methods of healing) for many years, she is now facing symptoms that have prompted her to seek out a high efficacy Disease Modifying Therapy (DMT). In my response to her I came up with what is, in my mind, an apt analogy. Since I like the analogy, I thought I would share it here too.

So, let’s back up for a moment. Why would anyone feel like they have failed if they decide that they need a DMT after going without a DMT for many years? In the MS community there exists a divide between those that prefer a “natural” approach versus those who prefer taking DMTs. This sometimes amounts to a disagreement almost as acrimonious as the divide in US politics at the moment. Among the biggest proponents of a drug-free path to treating MS is Matthew Embry. You can catch his documentary, Living Proof, on Amazon Prime. He is behind the MS Hope organization, and he promotes the Best Bet Diet. He was diagnosed with MS in 1995 and he now lives symptom-free, which he attributes to the lifestyle changes that he has made. He advises that he is not taking any DMTs. He believes that the drug companies have a vested interest in keeping MS patients sick. In fairness to his assertion, my DMT costs $30,617.52 annually, and it isn’t even one of the most expensive ones. The problem, as I see it anyway, in asserting that management of MS is all about one’s lifestyle is that people truly feel that relapses are due to personal failings, and not due to this asshole of a disease being its usual asshole self, when relapses eventually make an appearance. I personally don’t believe that MS can be managed by lifestyle alone. Perhaps it can be managed by lifestyle alone for a period of time, and maybe even a long period of time, but for most MS patients, another relapse or progression will eventually occur. MS is sneaky. It operates in the background. You won’t always be aware of the damage that it is doing until it is too late to reverse it. I would not risk managing my MS with lifestyle alone. I am happy to take the assistance of a high efficacy DMT. However, my belief that MS cannot be managed by lifestyle alone really stems from a personal observation. My first MS attack struck at a time when I was at my healthiest. I had just lost a significant amount of weight. I was running regularly. I was eating a diet rich in fruits, vegetables, and lean proteins. I was mostly abstaining from alcohol. Notwithstanding all of this, bam – I suddenly went blind in one eye. This experience leaves me with skepticism that lifestyle alone can control MS. However, MS is known as the “snowflake disease” – every case is unique, and it is very difficult to draw generalizations. Lifestyle-based disease management might be an appropriate option for one person and not for another. The problem is that we won’t know which person it was right for and which person it was wrong for until the person that it was wrong for has an attack which may render them disabled. So, did you fail if you tried lifestyle-based disease management and then future attacks left you asking for a DMT? Heck no! You just have an asshole of a disease and it is time to add to your defense roster (more on this later).

The opposite situation exists in the MS community too. Some patients take a high efficacy DMT and make no lifestyle changes whatsoever, figuring that they have done all that is needed. I personally think that this is a mistake too. No DMT is infallible. Given the successes that many MS patients have had controlling MS relapses with lifestyle changes, it is abundantly clear that lifestyle factors play a critical role in MS disease progression. The problem is that there isn’t a lot of funding out there for good research on nutrition and other lifestyle factors in treating MS, whereas there is a whole lot of money out there for good research on DMTs. Matthew Embry is absolutely correct about this. So we know that lifestyle plays an important role, but we don’t really know the extent of that role and we don’t really know which diet is most effective. Thankfully, I think Dr. Terry Wahls has made it her goal in life to learn as much about this as she can. Hopefully, in the future, we will have better information for making these decisions. I suspect that we will learn that nutrition and lifestyle factors are every bit as important as DMT use.

I think that we need to stop looking at treatment options as an "either/or" proposition and instead approach treatment options as a "both/and" proposition. If I end up with more serious disabilities, I want to be there knowing that I did absolutely everything in my power to prevent it. I don't want to be there wondering if I contributed to the situation.

So, I will finally get around to that analogy that I told you about. Those who know me well (and heck, even those who know me as a mere acquaintance) know that I am a football fanatic. When my husband (a former offensive lineman for the University of Toronto Varsity Blues) and I first started dating, he didn’t believe that I loved football as much as I purported. He thought that I might be putting it on to impress him. Then the NFL season rolled around, and all doubts were quickly laid to rest. My football obsession started when I was in grade 7 and had the opportunity to play flag football in school. I quickly learned that I loved the sport and I started watching the NFL, completely perplexing my parents who might occasionally check out the Super Bowl for the commercials. I am a die-hard and long-suffering fan of the NY Jets (you’ll never accuse this gal of bandwagon hopping). You know, the JETS – Just Endure The Suffering. My husband is a die-hard and long-suffering fan of the Buffalo Bills; albeit they have finally come around in recent years and are a true contender for the big show this year, so perhaps he will finally be rewarded for his undying loyalty. We are approaching the date of our fantasy football draft, so I have football on the brain and that definitely inspired this comparison. Now, for this analogy I went ahead and used my husband’s team because, when it comes to my defense against MS, I’m going to go ahead and use the #1 ranked defense in the league and not the #32 ranked defense in the league (Come on, Jets! You’re killin’ me!).

So much in life can be analogized to football. In the 2021-22 season, the Bills had the top ranked defense in the league, but they still lost the AFC Divisional Final to the Kansas City Chiefs. In the off-season, the Bills acquired Von Miller on a 6-year $120 million contract. Von Miller is an absolute stud of an outside linebacker. The LA Rams picked him up for their championship run last year, and it paid off. He’s got 2 Super Bowl rings and he currently holds the title for having the most career sacks of any active player in the NFL. The Bills already had one of the best strongside linebackers in the league in Matt Milano. Now, does the fact that the Bills felt the need to invest in Von Miller mean that they felt that Matt Milano wasn’t doing his job as well as could possibly be expected? Absolutely not! Remember what I said? They already had the best defense in the league. But the Bills don’t just want to have the top ranked defense, they want to win a Super Bowl. In that sense, the 2021-22 season was a let down. The Bills hope that in adding an elite pass rusher (among other acquisitions), they are adding the special sauce that pushes them all the way to a championship.

I told this member who was expressing her feelings of failure upon having to take a DMT for the first time, to instead look at it like the Bills’ acquisition of Von Miller. The Bills decision to pick up Von Miller doesn't mean that Matt Milano sucks, it means that together they will strengthen the Bills defense, just as beginning a high efficacy DMT doesn’t mean that all of the lifestyle measures that she had been using suck, it means that the DMT and the lifestyle measures together will be better than either were apart. The Bills acquired Von Miller because they want to fight like hell and win a championship. Commencing a DMT is the furthest thing from failing – it shows that she wants to fight like hell and put MS in its place. For those wondering, she did appreciate my football analogy.

See? Football. Analogy for life.

I share this analogy because I think that we need to look at treatment options just as we look at the defensive line of a football team. I don’t want a good strongside linebacker or a good outside linebacker, I want both! And while we’re at it, let’s toss in some excellent tackles, cornerbacks, etc. Treating your MS naturally doesn’t necessitate turning your back on DMTs. Choosing to go without a DMT is a valid choice (there are plenty of examples of people being successful while taking this approach), but so is using both “natural” approaches and a DMT. You can follow the Best Bet Diet and take Kesimpta (or any other combination of MS diet and DMT for that matter; the Wahls Protocol and Tysabri? Sure; the Overcoming MS Diet and Ocrevus? Why not?). One is not exclusive of the other, and I think that it is a big mistake to frame it that way. We should always be evaluating and re-evaluating our care plan to make sure that it is the #1 defense in the league and out there winning Super Bowls for us.