In the ongoing saga of my battle with MS and what to do about medication, I think I’ve decided once and for all to cast my lot with science.
Multiple sclerosis is a confusing and scary disease, even to researchers. They still don’t really know what causes it, let alone how to cure it. They do their best to come up with treatments that try to modify the disease to prevent relapses and disability progression.
Do I understand how the medications work? Not really. But that doesn’t mean they have no value. The fact that I don’t understand how they work is a testament to how much education the researchers have which I lack.
The reason I’ve decided to stick with science is because the unknowns of the disease are too terrifying. On the one hand, I’ve been telling myself that I’ll never get worse because my disease is stable and I haven’t had a relapse in 2.5 years.
But on the other hand, I also know that I can’t count on it staying that way. A relapse or progression in my level of disability could happen at any time. My last relapse in August 2017 wasn’t anything I saw coming and it was terrifying. I couldn’t tell if I was having a stroke or not. And that relapse left me with damage to the right side of my body, from which I’ve never fully recovered.
Part of my decision is pragmatic. Realistically, I’m going to lose my husband at some point in the next decade. It could even be much sooner than that; we have no way of knowing. But if and when his health declines, that’s obviously going to be a big source of stress for me–and stress is one of the top triggers for an MS relapse.
The other practical matter is that I have to do everything I can to try to avoid getting worse. If he’s not going to be around to take care of me, I don’t want to lose my sight, be wheelchair-bound, or be unable to drive. Those things would be terrifying enough in themselves, but even more so if I’m completely alone.
But my decision isn’t based entirely on fear, either. It’s that I’ve realized that the natural approach seems simple-minded and relying too much on what is essentially denial. Maybe I just don’t believe enough in the power of diet and natural supplements. There’s not enough research to support them as exclusive treatments. What I do know is that when I was on the Tecfidera, I was doing well enough to exercise frequently, and now I’m not. Being able to exercise regularly will hopefully help me keep my mobility. I miss it.
Another thing that I find disturbing about those who advocate the natural approach is that they seem to reject science in other aspects, too. Most are anti-vaccination, an issue I’ve come to firmly believe in (with a few exceptions; I still don’t think newborns need the hepatitis B vaccine yet and I think natural immunity to chickenpox lasts longer than from the vaccine.) They also promote chiropractic care a lot, which I find sketchy, are anti-fluoride, and talk a lot about avoiding “toxins.”
There’s also this prevalent idea among them that there’s a conspiracy by the medical community to push drugs on people with MS and that it’s all solely profit-based. I’ve fallen for that line of thinking a lot. But what it all comes down to is that even if the MS drugs are profitable and don’t provide a cure, they’re still the best that science can come up with so far.
Are a healthy diet and regular exercise important? Yes, not just for everyone, but for people with MS in particular. I do the best I can but I know that I do better when I’m on effective medicine.
In short, this disease is too serious to take my chances. I finally get that. Even if there’s no cure, I don’t want to wind up completely disabled and wish that I had taken the meds because I might’ve been able to stop it. I don’t want to have to wonder. Maybe there’s even hope that something could get me to not need to be on disability anymore. I’d like to think of being capable of supporting myself when my husband’s gone.