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Reasons for Hope

As I’m writing this, MS Awareness Month is winding down and about to come to an end. While many of us do our best to raise awareness all year long, this is a special time we set aside to get others to look at our cause. While this can be a great time to feel less alone, as many of our symptoms and even fears are spoken about more often, it can also be a frustrating time. The source of this frustration is simple: we do a lot to boost awareness and we work hard at raising money, just as we do every year, but it seems like we’re no closer to a cure then we were even years ago. I’m here to hopefully help instill a bit of hope in you.

Hurting wallets and bodies

I get it, when I stop and think about how we don’t yet have a cure, it can be upsetting. The thing is, it’s not just that we don’t have a cure, it’s everything that goes along with treatment and trying to live a decent life with this disease. Multiple sclerosis, like many diseases, is an extremely expensive illness. That’s made even worse by the fact that many will have their ability to work severely affected by the disease. Patients are slowly beginning to bring in less money, all while healthcare costs continue to rise. Many people want a cure, not only to make their body feel better, but to make their wallet feel more healthy as well!

Maddening inconsistencies

Expenses aside, MS is a tough disease to live with. I won’t even go into the many, many symptoms it can cause, but, suffice it to say, it can impact every single part of your life. A unique issue that those with MS face is that the primary disease-modifying medications that we take don’t actually work to help our current symptoms. So they aren’t noticeably helping us at the moment and still give us rough side effects. The idea of taking a medication now in order to slow the disease and prevent problems later can be pretty hard to reconcile for many people. Factor in the unknowns, some people can have MS their whole lives and only have one exacerbation, while some can have relapse after relapse and become very impaired. Lack of consistency in this disease is maddening. Taking a medication and it not helping your current symptoms can feel like a waste to many, especially when these meds are expensive. It’s not hard to get so frustrated that you want to stop everything.

Reasons for hope

It’s easy to feel like all we do is spend more and more money without any progress. It’s easy to feel like this is all some scam. I feel my perspective, which even I lose sight of at times, is helpful here. I grew up with MS, my grandfather had it, and then I was diagnosed at the age of 21. This disease has been a part of my entire life, and I’ve now lived with my own diagnosis almost as long as I lived without it. So I’ve witnessed the advances firsthand. There was no medication, no disease-modifying treatment, for my grandfather to take. I witnessed what that could do to a person. I learned, as a child, how to use and change a feeding tube, to help roll him over so we could clean up his bowel movements, and I was there when he passed due to the complications from this disease. If he’d had access to any of the medications today, his and my entire family’s lives would be amazingly different.

Tremendous advances in MS treatment

In my own situation, I tried numerous medications to slow the disease, before finally having Tysabri slow it down or halt it (for the moment anyway). Medications like Tysabri didn’t exist when I was diagnosed. I can’t help but wonder if I’d still be disabled now if I had had access to something like Tysabri when I was diagnosed.

My point here is that we’ve had tremendous advances in a short time when it comes to MS treatment, probably more advancement in a short time than any other disease. They’ve even just rolled out the very first medication for progressive MS (Ocrevus), that’s huge. Yes, none of these are a cure, they simply hope to slow the progress of the disease. It can also seem frustrating because so many of them seem alike. That’s important though, because everyone’s bodies tolerate these medications differently. More options mean that more people have a chance of being on them. We’ve had all of these advances while still, in the grand scheme of things, not bringing in the same amount of money as other illnesses. I don’t know the numbers, but I’m pretty sure money for MS research isn’t bringing in close to what many of the cancers are. The NFL isn’t bathing their field and players in orange for an entire month. While it’s an expensive disease to us personally, that’s still a pretty big thing to consider. Even with all that, there have still been a lot of advances and new medications.

What’s next

The future of MS research is extremely bright. This past February, the American Academy of Neurology released a report confirming that the number of people with multiple sclerosis was double what was thought even just a year before. At first thought, that may seem discouraging, but it’s actually going to be amazingly helpful for us. That number doubling will not only increase the amount of money that ends up going to MS research, it will help drive more doctors and scientists to look harder at the disease. That’s just another reason to keep having hope for the future.

So as terrible and expensive as this disease is, we have seen some pretty amazing advances, just in my lifetime. We’re also poised to have even more breakthroughs in the near future. None of this necessarily helps our everyday lives, I get that, but it’s still a reason to lift our heads and have hope. These are still reasons to keep hanging on and to keep battling this disease. If we keep fighting long enough, we may just get cured, or close to it, in our lifetimes.

Thanks so much for reading and always feel free to share!

Devin

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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

  • seaattle
    15 hours ago

    Thank you for sharing. I also grew up with it. My dad had it. He passed away from it when I was 14. My younger brother was dx at 19. Then me at 30. Both of them passed by age 40. I am the only one left and saw first hand how the progression took both of them. With the last two years of their lives being very similar, I know what to look for. I know what’s coming, but it’s not here yet. So, onward I go. I’m at the 20 yr plus mark and still going ok.

  • Lily
    1 week ago

    Devin – you are awesome! Keep writing and sharing!

  • Devin Garlit moderator author
    1 week ago

    Thank you @Lily!

  • Anonymouse
    1 week ago

    While I know it’s easier said than done, I really wish that — given there is no cure — more research would go into somehow coming up with medications that have fewer risks and side effects.

  • Shelby Comito moderator
    1 week ago

    I hear you, @anonymouse. We will always keep you posted on the latest in research, medicine, and treatments, and we continue to have hope as well. Thanks for taking the time to comment. – Shelby, MultipleSclerosis.net Team Member

  • Anonymouse
    1 week ago

    Thank you, Shelby, and Devin, too. This is a great web site.

    Speaking for myself only, I wanted to pursue treatment and continue to do so. I’m in disbelief, however, that patients seemingly have many options and yet must run such risks and often undergo very harsh side effects should they choose this, that, or the other med.

    Even the older injectables are — well, injectable. And as far as side effects, it is of course hard to constantly make oneself feel ill in order to at least try to hold a line on progression and hew to a goal of lifelong, never-ending treatment.

  • Anda
    1 week ago

    Thank you to all of you who share their experience. As a mother of a son who has diagnosed with MS 7 years ago, and now in the hospital with a bad relapse. It helps me to understand better the illness. Thanks again for all your posting. Regards, Danuta

  • Devin Garlit moderator author
    1 week ago

    Thanks so much @anda, very much appreciated!

  • Shelby Comito moderator
    1 week ago

    Oh @Anda, my heart goes out to you! It must be so heartbreaking to watch your son going through this, and I’m glad to hear that our site has been of source of information and greater understanding for you. We have a special section on our site dedicated to caregivers I want to share with you here: https://multiplesclerosis.net/support-for-caregivers/ I hope it’s helpful to you. Please know we’re thinking of you and your son and welcome you to reach out anytime you need information or support. Best, Shelby, MultipleSclerosis.net Team Member

  • Anda
    1 week ago

    Thank you Shelby for your understanding, info for caregivers, and your kind words.
    Take care.

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