Buyer beware

Buyer Beware

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • north-star
    4 years ago

    Excellent article! Let me add another exclamation point!! An acquaintance of mine who’s a nice person (and friend to people I know and like) will not stop bugging me about starting on a supplement she sells. I’ve run out of nice ways to say I won’t take it, can’t afford it and my neurologist would tall me not to bother. She recently snuck a copy of the book describing the miracle to me via a friend (it’s going to the dump). I’ve run out of “nice” as far as she’s concerned.

    And it’s not like I’m sitting on my couch watching TV and sobbing (though some days deserve the magic healing of ice cream and Colin Firth as Mr. Darcy). I’ve had MS since the early 1970s, with great LUCK I’m still clinging to mobility, taking Copaxone, using a walker, driving with hand controls. I have cognitive issues, I’m vulnerable to depression, very old men rush to open doors for me. I deserve points for nurturing my sense of the absurd (helps keep a sense of humor intact), for getting up and getting going every day. That’s enough of a miracle for me.

    Maybe we need a bright red bracelet: Thanks for your love! MS is incurable! We’re kinda okay with that!

  • Lefty Lib
    4 years ago

    Your article is quite timely because a couple weeks ago I had read yet another article on how someone was “cured” of their MS through this or that (diet/exercise I think). Upset, I immediately started writing my comment about how there is no cure yet, and that the article was very misleading and rather unkind to those who don’t know better. A few others had agreed with me, after the first few comments were from people who had been encouraged by the article. I also copied the link for a Facebook MS group and people there were pretty angered there was yet another misleading piece of info some will desperately hold on to. I was diagnosed in 1990 with RRMS. Started with Betaseron, then Avonex, then Copaxone. I have been pretty stable except for one relapse in 2002. Cognitive issues are worsening… I’m still mobile, however. Heat kills me and spasms are quite bothersome. Overall, not too many complaints. Nice article, Stephanie!

  • Kate
    4 years ago

    Thanks for this article, Stephanie — I have had MS for almost 27 years, but was guilty myself of thinking I had “beat” it for at least the first 20 because my relapses were spaced far apart and most of my symptoms were invisible to others. And while I do think my diet had a lot to do with my remaining relatively well (I was a naturopath! So believe me, I’ve tried it all), I do wonder whether I will be paying at some point down the road for silent damage that may have occurred during all those years I didn’t take any DMDs. This disease affects everyone differently and at wildly different paces; it is arrogant for anyone to claim they have “cured” it simply because they have been symptom free for a period of time.

  • Cathi
    4 years ago

    And I get livid when someone says “X did this and cured her MS.” HELL NO SHE DID NOT!!! MS is an incurable disease so one of 2 things happened: 1) she was incorrectly diagnosed & she doesn’t have MS or 2) she has Relapsing/Remitting MS and got damned lucky this time. People that should know better say the stupidest things & I no longer suffer those fools gladly, whether they be friend or foe.

  • Michelle
    4 years ago

    Finally, word is getting out that claims to “beat” or “cure” with diet and super special aka expensive supplements is not just unproven – or more accurately has been proven not to work over the last 50 years MS diets have been around – but also can be dangerous. MS is not just an “in the moment” disease, we must also look at the future and progression. I’m betting my future will be better with proven MS meds than without them.

    I strongly belief that MS awareness will never get as popular as it should because these drs and other people who claim MS can be “beat, healed, cured” by diet and supplements are presenting a false picture of MS to the public. Why would anyone support a true MS cure if we can cure, best or heal ourselves by diet and supplements?

  • Lisa
    4 years ago

    Thanks for your article. These have been my thoughts as well, but you put them into words.
    NRD – It’s not about not believing. It’s about things needing to be carefully studied. The stem cell process is being studied.

  • NRD
    4 years ago

    Doesn’t the stem cell process offer hope? If no one believes, how will we ever know if something may work?

  • north-star
    4 years ago

    Don’t worry, true scientists are on the job and breakthroughs are happening. I have a neurologist who does research, she’s up on her field and she lets me know about exciting research, drug trials and current views on using conventional therapies. I recommend going to an MS-centered clinic or hospital if you can.

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