First, a bit of an apology: what is to follow is both a bit polemical and very long. But I felt like writing, so here goes:
I was recently meeting with my in-town neurologist, and he was pushing me to go on a drug. Big time. Which drug did he want me to take? He said it didn't really matter. He just wanted me to get on one. If it didn't work out, he'd bump me to another one. Three of the four neurologists I've seen, all MS specialists, have all taken the same position, very assertively insisting that I start on a "disease modifying therapy." One recommended Copaxone. Another advised Tysabri -- until learning of my high JCV load. Copaxone came up again, as did Gilenya -- but my chronically low white count (neutropenia) would likely not work with that one. So they can't decide; they just want me on something.
"I'd estimate that about 99% of folks in the U.S. with MS are on some form of medication for it," my in-town neurologist told me, then repeated that that was an estimate, as such a percentage would be hard to determine.
And yet, the idea of taking one of the existing drugs for MS still doesn't sit well with me. As I've mentioned on this blog before, I first started experiencing numbness in my appendages eighteen years ago, and my first bout of diplopia (6th cranial nerve palsy) was six or seven years ago. I was only (finally) diagnosed with MS this past year, but I've had MS for a good long while, and by all accounts -- even those of my various neurologists -- I'm doing quite well. I have a few neurological hiccups, it's true, but am in great shape (if I do say so myself) for a guy of 45 with or without the MS.
So why would I start taking drugs? Joseph Dumit, in his book Drugs for Life (links go to Amazon), argues pretty convincingly that the entire U.S. medical establishment has moved toward prescribing a litany of pharmaceuticals based entirely on calculated risks. Yes, as a guy in my 40s who has had MS for a good long while, I am at risk for all kinds of hellish bodily and cognitive experiences. But to treat my symptoms now would be to treat nothing, as I have no symptoms -- or very few.
I am always having to remind myself that whether or not to take drugs to treat MS or any other disease should be up to the individual. No one "should" or "must" pursue any treatment -- that should be a choice. At least that's how I see it. And with MS drugs being so potentially dodgy -- low success rates, wild side effects -- I think it's crazy to push them on anyone.
As everyone in the MS community seems to know, Terry Wahls insists in her book that diet can do amazing things for those with MS, and yet she still advises that folks follow their doctor's orders and take a disease modifying therapy (drugs). This strikes me as a strategic cop out in her book, as she likely doesn't want to alienate her fellow practitioners. George Jalinek does the same thing in his book: he insists that Swank had it right and that diet (among other things, like getting some sun and staying healthy in other ways) is a great way to curb exacerbations -- and yet Jalinek still says that readers should follow their doctor's orders and take the drugs.
Given all that I've seen and read, I see some people doing well on the drugs, and others not so much. Now averages (as Joseph Dumit describes) might show that those on MS disease modifying therapies tend to do generally better than those not on the meds ... but then my doc is telling me that almost no one is not on the meds. So how do we know what MS even looks like and presents itself as in a healthy, active, diet and stress and rest and Vitamin D conscious person?
It seems like most of us with MS turn, at one point or another, to the trope of "living proof." The person who runs marathons and has MS is "living proof" that one can pursue hard-core athletics and manage the disease. The person whose brain fog has been dissipating is "living proof" that Gilenya really works. And the person who eats glutenous foods and has a flare-up is "living proof" that gluten provokes swelling.
I'm reluctant to say, then, that I'm "living proof" that someone with MS can be quite healthy and not take any form of medication. This might change tomorrow. I am, however, tired of being told that pursuing a disease modifying therapy is something I absolutely need to do. I don't think it is irresponsible for me to ignore such suggestions; I think it is my choice. It's my body, my life, and my MS -- and from everything I've read and seen and heard from others, I remain extremely skeptical that any of the current medications would be productive in my particular, unique, individual case. And it is with that mindset that I move on, at least until tomorrow.