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Food for Thought: What Does “Cure” Mean?

“They are so close to a cure for this awful disease”, I was told so many times after I was diagnosed. “A cure is right around the corner!” I still hear it all the time, as I am sure everyone with multiple sclerosis (MS) does! I rarely partake in such conversations anymore but I was involved in one recently that got me thinking; “Everyone here is talking about a ‘cure’ but what do they mean by cure?” Something all of us want so badly but at the same time, based on what I was hearing, something a lot of people haven’t seemed to really think through? “Cure” seems like a pretty simple concept but with a disease like MS is it really? That’s all I am really wondering here; when you say “cure” what do you mean?

So when I really think about it I think about two main stages; stopping the disease and repairing the damage it leaves behind. If there was a magic shot that completely removed MS from our bodies that would be great and all but what about all the damage that it leaves behind from over the years? It would be like pulling an army out of a war; sure they are not destroying everything anymore but the cities are still in ruins! How do we repair the damage? Or when people think about a “cure” are they simply imagining that they will get a shot and everything goes back to normal? You wake up the next day and you can see clearly, your balance is back to normal, you are full of energy, no more pain, and you can think clear enough to work on a new career in corporate accounting? That would be great but I know that is not how it really works. That’s why I have always been interested in a therapy that can repair the broken myelin in out central nervous system (CNS) which is really what causes all the symptoms of MS.

So far all the treatments we have for MS aim to do one thing; stop the progression of the disease. They do not promise improvements. Some people do however drastically improve and I think that is because their treatment is stopping the active inflammation that has not yet done “permanent” damage not because it is repairing myelin. So again, no treatments (as of yet) promise anything like that and I do admit that I a bit of a cynic when it comes to this; a huge part of me thinks that “big pharma” does not want to produce a drug that cures MS because it is so much more profitable to make a drug that you have to keep spending money on for the rest of your life. Again, I know that is cynical and I am certain that there are people out there who don’t care about money and will do whatever it takes to find someone to produce the cure once they actually find it because they truly do just want to fix this “problem”.

But there is that word again, “cure”, so let’s say (for the sake of argument) that they create a drug that completely stops MS and essentially makes it disappear. What then would we do to fix the ruins that are our central nervous systems? Maybe they will eventually find something else but as of now, I think the answer may lie somewhere in stem cell therapy. A stem cell can become any kind of cell in the body which means they can regrow damaged or missing myelin. So you have stopped MS from attacking your CNS and causing permanent damage so the next step would be stem cells since they should be able to regrow what you are missing. Not exactly a quick fix but a fix nonetheless. The results from current studies on Hematopoietic stem cell transplantation (HSCT) are pretty promising so I really recommend you do some reading on that. The results are pretty impressive and that is just with stem cell therapy alone so if they could develop some kind of combination therapy I think that would be amazing. Expensive but amazing.

So what do you think the word “cure” means in regards to MS? Where do you think the “answer” to MS lies? It’s such a complex problem so there are certainly different ideas on how to solve it. Share yours below!

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

  • gmc
    3 years ago

    Have any of you read about Clemastine showing re-myleinization in optic neuritis? It’s in phase 2 trials. What used to be Tavist is no longer available and you can bet IF it does work, it will be re-named and cost much more than an OTC antihistamine.

  • EllieHSCT
    3 years ago

    I’ve had HSCT and at this point I consider myself “cured.” Now if my brain or spine develop lesions then I’ll have to take that back but I can already tell that my MS is in remission. I intend for it to be permanent and just hope my body agrees! “Cure” means something different to everyone but to me if it has stopped the disease in its tracks then that’s a cure to me!

  • rmdanielsom
    3 years ago

    Matt, you are asking a really great question. It is a question everyone needs to ask themselves.

    To me, and I think most docs/nurses,etc.. “treatment” means symptom management and “cure” means both stopping the disease and on a limited basis, reversing the damage it has done-think cancer.

    I believe there will be no “magic pill”, no “silver bullet” for MS, it’s just too complicated between genetics, environment and viruses.

    Any effective treatment and/or cure will be a cocktail of drugs and/or therapies at least as personalized as those used by HIV patients, maybe more so.

    I know most people don’t want to hear/read this and most pharma companies don’t want to admit it, but that doesn’t make it less true.

    The best example existing right now is relapsing MS and progressive MS.

    The current 14 DMT drugs available in the U.S. only work for the relapsing form of the disease to slow, not stop, progression. There is emerging data that one or two of them MAY provide some limited protection when the relapsing form flips into secondary progressive, but they don’t stop the over all progression.

    If you have the progressive form of the disease (either secondary or primary) there is no FDA approved DMT. You are managing your symptoms with a constantly changing drug cocktail of pain meds, anti-spasmotics, anti-anxiety, anti-fatigue and constipation drugs.

    As someone with PPMS, I want a cure, but I’ll take a treatment while a “cure” is being developed.

  • Matt Allen G author
    3 years ago

    I completely agree, have you been following the progress on Ocrelizumab?They are trying to pass FDA approval for use in progressive form of MS which would make it the first DMT for progressive forms of the disease!

  • DonnaFA moderator
    3 years ago

    Hi, rmdanielsom!

    Thanks very much for being here, and for sharing your thoughts. Do you think there is more hope of developing an HIV-like treatment protocol for MS, or in stem-cell therapies? Do you think the FDA is predisposed to approving one over the other?

    Thanks for being part of the community!

    All Best, Donna (MultipleSclerosis.net team)

  • Deborah Dalton
    3 years ago

    Hello Matt,
    WoW What a question you ask with shared information of possible solutions for MS patients of each phase of the disease MS.
    I was diagnosed on January 24th, 2012. It was only a month and a half before my fiftieth birthday.
    It will soon be five years since this terrible central nervous system altered my way of living.
    I went straight to having Tysabra infusions, I was told I had Primary Progressive MS. Tysabra failed me, after one year and two MRI’s I need a specialist.
    I have been taking chemotherapy four times a year since May of 2013.
    On Sunday I fill up my day and night pill box.
    July 31st 2016, I didn’t fill my boxes with just three different prescribed medications. That equaled to 84 pills a week.
    The “cure” for me to use my walker again, and get control of my muscles functioning after not walking for two years was simply trusting my instincts.
    I see a new neurologist in October and I am hoping that he takes me off or changes the chemotherapy as my MS treatment.
    We the MS victim’ end up being one of the commodities to some of the biggest selling drug companies in the MS world.
    Know what your taking and what it is for. They prescribed Amprya until I said I haven’t even walked in a year, Why do I still need this drug? I didn’t need it but my point here is they will try to push medicines cause they can.
    This is Sept 4th 2016 and I am doing wonderful and I was told I would never walk again.
    My idea of a “cure” is often within yourself and having enough will to just do it! Warm wishes, DD

  • Mark
    3 years ago

    You are correct DD, sometimes the cure is found within. I was diagnosed in 2005 and had lost all feeling in my right side. I was told I’d never walk again, drive again, or do anything like that. I refused to believe, or take their word for that, and found a MS specialist who cares about your life and after of several years I relearned how to walk, then drive and alot of the things I was told would Never happen.
    Keep the faith DD, and you will find a way!
    Good Luck you have more strength than I ever had.
    Mark

  • Matt Allen G author
    3 years ago

    Are you and your doctor awaiting Ocrelizumab? I know they are actually trying to get it FDA approved for PPMS and it should be available towards the end of this year. But yeah, I always try to look at fixing my MS realistically, I just mean how people “dream” of the cure being right around the corner, people often are not looking through a realistic and calculated lens haha. Good luck with everything!

  • lipasi
    3 years ago

    Very well said.

  • Debbie
    3 years ago

    I have been hearing about a cure coming since 1997. I am with you. I just want to go into a long remission like I was for 6 years after Novantrone. True I now see a Cardiologist for what the Med did to my heart but I was in a remission where I could go go go. Tha’s what I think is more possible than a “CURE”

  • Matt Allen G author
    3 years ago

    Hmm I want to hear more about this, very interested. Since we can’t really start a conversation here (won’t let you reply more than once) visit my personal blog (link is on my profile page here on this blog) and contact me there. I always try to talk to people who have been on Novantrone, so I really hope your message will find it’s way to me.

  • Matt Allen G author
    3 years ago

    “WAS” in remission? Did it not last? Email me, I would love to learn more; mattalleng@yahoo.com

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