Recently, while talking with some other folks afflicted with Multiple Sclerosis, I was made aware of a pretty disturbing incident. Several of them had been invited to a Facebook group that had the objective of convincing people to discontinue their disease modifying drugs (DMDs) in favor of only diet changes and marijuana use. I was, to say the least, appalled. It seems criminal in my mind to try to persuade someone to abandon their doctor’s recommendations like that. You may have heard on the news that science seems to be under attack these days (in fact, there was a march for science recently to help raise awareness about this issue). It now seems that science is being vilified in the MS community as well. It feels like every day that someone new is claiming that medication is bad and must be abandoned. Sorry conspiracy theorists, I’m here to remind you that medicine is not poison!
Diets and natural remedies
People calling for natural ways to stop MS is not something new; these strategies have been around for decades. This disease is incurable, and medications to slow its progression have only really emerged recently. With so few options for so long, it’s no wonder that people would try anything to stop it. The thing is, after all of these years, there is zero proof that any of these practices, like simply changing your diet, have any effect on disease progression. Some people swear by them, however, it’s important to remember that just feeling good and not having any symptoms does not mean that the disease is gone. Even a clean MRI is not a sure sign that the disease isn’t still active. People love to talk up the Wahls diet, which, again, isn’t proven. Most people don’t realize that Terry Wahls had extensive chemotherapy and physical therapy before she credited her diet as her lifesaver. As far as a good diet is concerned, of course, we should all have a good diet and take care of our bodies. You will feel much better in general if you eat healthier foods and exercise more, but that doesn’t mean that your disease is stopped. Never confuse feeling good with what might actually be happening under your hood, and remember how invisible this disease tends to be.
Medical marijuana is often heralded as another lifesaver by many. I admit, I’m a daily cannabis user, it’s changed my life. However, I understand that it helps me deal with my symptoms. In no way do I expect it to stop my disease. There is zero proof that marijuana can stop MS progression. This again highlights that we need to not confuse the treatment of the many symptoms that MS can cause with treatment of the actual disease. Medical marijuana is excellent when used alongside a disease modifying drug.
Not everyone can take medication
With anything, whether it be a medication or even a particular food, not everyone will react well to it. Like any medication, MS treatments have the potential for side effects. For some individuals, the side effects can’t be tolerated at all. For others, the medications will not successfully halt the disease. We are lucky though, to have more and more options coming on the market. Finding the right DMD can be a very long and rough process, which unfortunately sometimes leads to people prematurely stopping all drugs. It’s important to remember that it can take a lot of trial and error to find the right and tolerable medication, and even then, you may never find a medication that works for you. That doesn’t mean the effort wasn’t worth it! It should also be pointed out that many side effects can be dealt with and anyone experiencing them should talk to their MS specialist before they decide that they are too much to deal with.
Lack of symptoms does not mean you shouldn’t take medication
There are many people who see their MS as “mild”. They’ve had a couple relapses and day to day, they are mostly healthy. They may see no need to take a disease modifying drug. In my opinion, that is completely the wrong attitude and shows a lack of understanding about both the disease and how these medications work. I’ll end up saying this a lot in this article, but you have to separate the concepts of disease and symptoms. Regardless of what symptoms you experience on a daily basis, the disease can still be active. The myelin around those nerves can still be eaten away without you noticing it. You don’t often notice the destructive damage the disease causes until it’s already done. Most people who have Relapsing-Remitting MS should realize this. Sure, those relapses seem to come on suddenly, but the disease has been working inside you to cause that relapse for a long time before it happens. Thus, feeling great and having few symptoms is not a good reason to stop medication.
This entire article is such an important topic to me that I worry I am not able to do it justice. I consulted Laura Kolaczkowski, one of the other experienced writers here, to ask for her thoughts on this, as I know it is an important subject to her as well. Laura had this to say: “My primary concern is we know MS is always progressing – sure we could have very mild MS and never be bothered with major symptoms again. But for most people, that is not the case. Ten or twenty years later, the effects of not being on treatment are going to be apparent. We might not lose leg or arm function, but will we have protected our brains? Atrophy occurs with age, and is accelerated with MS – cognitive ability is pretty high up on my essential functions list.”
No, you aren’t poisoning yourself
One of the common tropes that conspiracy theorists like to put out there is that you are poisoning your body with medication. You hear this with anti-vaxxers and now with a similar crowd in the MS community. Please don’t fall for that. I understand that side effects may make you feel bad at times, but don’t discount these marvelous innovations as being bad for you. A disease modifying drug that slows the progression of an incurable disease is not poison, it’s medicine. The human lifespan has increased dramatically over the years because of medications; calling medication poison is absolutely ludicrous. Do not let one (or even a few) person’s bad experiences with side effects prevent you from recognizing the massive benefits of these medications. I again asked Laura what she thought, because I know that she has dug deep and researched many of the studies regarding not only DMDs but also alternative treatments, like diet modifications. Here’s what she had to say: “Unless there is a problem with allergic reactions, the adverse effects of these DMDs are minimal and there are long term safety profiles available to show they are not poison and they are not dangerous, which is often part of the anti-DMD faction’s claims. The distrust in science and medicine these days concerns me because this has crossed over from just wanting to know more and questioning, to people making claims without evidence”.
MS is a horrible disease. We’re in the fight of our lives and not everything is going to be easy. We aren’t simply taking aspirin to fight a small headache here. I grew up with a grandfather that had MS, and he didn’t have access to the DMDs we have now. I watched how MS ravaged him, I saw how disabled he was, and I was there when he passed away due to complications from MS. Left untreated, this disease can be absolutely nasty. It slowly but surely steals parts of you until there’s nothing left to steal. I can only imagine what he would think if he knew that some people have access to medication but refuse to take it.
No matter what, make the decision on your own
While I’m obviously in favor of science and medicine, the most important thing to remember is that the decision is yours and yours alone. Always remember how different we are from person to person with this disease and that it’s important to investigate everything on your own. Be wary of people on the internet and social media trying to sway your opinion. While those places can be great sources of information, they are more and more filled with people trying to push their own agenda. These people don’t really have an active interest in your well being. No matter what you decide with regards to your treatment, please discuss it in detail with an MS specialist before proceeding.
As I mentioned earlier, having grown up witnessing what this disease can do when left untreated, I feel I have a duty to write this article. We need to stop the war on science and medicine, the risks are too high. Please remember that how you feel is not a good indicator of your disease progress. Please trust in the years of work that have gone into developing these treatments. I want to again thank Laura for her input, this was just too important of a topic for me to talk about on my own.