After living with MS for a while I have incorporated a few more “four letter words” into my vocabulary. These words are my red flags, and I know I’ve ventured into unscientific waters when I stumble across them on the internet while doing some research. If I do read them I usually stop and hit the browser's back button as fast as I can. People throw these four letter words around recklessly, not bothering to look around and see if there are any unsuspecting youngsters in the vicinity. So what words am I referring to? You may be surprised to know that they are “cure” and “beat”. The two words that stand as a beacon of hope for many people, immediately trigger skepticism and distrust from me.
Not to be a downer, but there currently is no cure for multiple sclerosis. So what are the millions of us around the world supposed to do? Well, live our lives anyway! Hopefully we can find ways to live as symptom free as possible, and to keep disease progression to a minimum. For those of us with relapsing-remitting MS lifestyle changes that make our body strong, like a healthy diet and regular exercise, can certainly make us feel better then we feel during a relapse. Some people may have relapses far less frequently then others, and may even do fine without any medication at all. Recently the effects of cannabis have also been praised by many, and I’m always thrilled to hear that a fellow MSer has found a way to be more comfortable and to function better. However, I still have to point out that there is a difference between treating symptoms effectively and curing a disease. While diet, exercise, and things like cannabis are helping many people live their lives despite MS, they still have not beaten it or cured it just yet.
So what exactly gets me so worked up? Aren’t people just trying to have a little hope? Yes, of course. But it’s also dangerous in more ways than one. For instance it can become dangerous to patients who may actually do harm to themselves by stopping medications without consulting a doctor. I really hope nobody here would take advice from the internet over what their neurologist recommends, but unfortunately I have encountered people who do just that. I have seen young patients end up severely disabled after resisting disease modifying drugs for several years even though they were having multiple relapses. I realize not everyone takes these powerful medications, and many people do just fine without them. But if you are not doing fine without them, and your disease is progressing, then it may be time to have an open discussion with your neurologist. MS is unique for every person, so you and your health care team should tailor treatment to meet your individual needs. Therefore it is in fact dangerous business to claim that Diet A can cure MS, or Supplement B is all you need to fend off disease progression. Really any blanket claim should awaken suspicion, because you all know that no two MS patients are alike in how their disease presents or what treatments work for them. This is false advertising, pure and simple. And the sellers are playing with the consumer’s lives.
Personally I also find it incredibly discouraging to read about these miracle cures. I’ve always eaten healthy and have been a competitive athlete my whole life, but I have still had four relapses in the last year and a half. So when people come up to me and suggest a certain diet because it cured another person they know, I can’t help but feel a little let down that I couldn’t have the same results. I look down at my own body and think, “traitor, why can't you do that too?”. All these stories succeed in doing is making me feel like I have some horrible freakishly aggressive form of MS that greedily requires diet, exercise, and several medications to control it. But then I recenter myself, and realize that I just have to do what works for me.
I also think that advertising a cure for MS sets us back when it comes to public awareness. How many people have ever been frustrated when someone tells you that you could be cured like this other lady they read about if you do X,Y & Z? I get tired of trying to explain MS and it’s invisible symptoms to people who have already been told by the media that I could be cured if I just tried hard enough. What they don't realize is that the people in these success stories are controlling their symptoms effectively, but they still have MS. Again, these sellers are setting us back and negating all of the hard work that MS Activists around the world have done. More than anything I hope to one day be able to say “I used to have MS”, but for now we need to spread awareness and help to work toward that day.
Do you celebrate your MS Anniversary?