The Unthinkable: MS, Death, and Life Expectancy

It’s time for me to talk about the unthinkable, the topic that is extremely taboo for many of us with Multiple Sclerosis. I’m talking about the effects MS can have on our deaths and life expectancy. Like many topics I discuss, I got the idea for this by talking with others who battle the disease. Also like most things I discuss, I have a personal connection to it, as my grandfather was taken by MS. This topic is tough for most to talk about. It’s even harder for our friends and family. Just because something is unpleasant, it doesn’t mean we shouldn’t discuss it and inform ourselves, so let’s get to it.

Can MS kill me?

I’m sure many of you have heard that MS is not fatal. People are fond of proclaiming that the disease won’t kill you. I get it, it’s comforting to say, “I have this disease, but at least it isn’t going to kill me”. I guess in the technical sense, that is true. It’s not MS that kills you, it’s complications due to MS that kill you. It’s really all about the language here. People want to say that MS can’t kill. While technically true, MS can still lead to death. People don’t want to say that, though. I know it’s all semantics, but if a disease causes you a complication and that complication causes your death, can’t we at least admit the role of the disease in that? For example, most people who have AIDS (and I am not comparing the diseases, just the language) actually die from an infection or other related complication because their immune system can’t fight it off. We still attribute those deaths to AIDS though. It’s something to ponder. MS doesn’t technically kill, yet according to the National MS Society, those with MS have shorter life expectancies than those without (by seven years, that’s not insignificant to me). I mentioned before that my grandfather had MS. By the end of his life, he had no control of his limbs and he had trouble breathing. He would constantly get pneumonia because of his MS and that’s eventually what killed him. I still consider it MS that took him from us though, because he wouldn’t have had those issues had he not had the disease.

Complications

As I said, it’s “complications” from MS that end up taking us early. So what are some of these? (this is far from a complete list)

  • Pneumonia is a pretty common problem for those with MS. Swallowing problems are common, and they lead to food and drink getting deposited in the lungs. Pneumonia is a serious problem among the MS community. I’m in my 30s and have already had several bad bouts of it, I’ve even been hospitalized because of it. As I mentioned, it’s also what claimed my grandfather
  • Infections are another common problem. The immobility that many with MS deal with can lead to bed sores, which can cause bad infections. Urinary Tract Infections are another common affliction that can become deadly if not treated.
  • Falls pose a huge risk to those with MS. It’s consistently one of my doctor’s greatest concerns (a concern not at all lessened when I fell through a window last year). Numbness and weakness in the legs can lead to a lot of falls, as can spasms.
  • Suicide is a big risk. Some will say I shouldn’t include it here, but I disagree. The National MS Society mentions that people with MS are 7.5 times more likely to commit suicide than the general population. That is a significant risk! That number should shock anyone that reads it. Often, depression and suicide are not treated or given the due diligence that they deserve. We have to stop the taboo around these topics!
  • Other complications can arise. With a disease that can force inactivity and make regular exercise difficult like MS can, our overall health risks are increased. We need to take extra care of our bodies in order to fight conditions like heart disease and diabetes. Basically, it’s much easier to have an unhealthy lifestyle when you have MS, and that can cause all sorts of complications.

Good news

While I hope that I’ve at least shown that MS can have some fatal consequences, there is room for hope. The life expectancy of MS patients is starting to get longer. The addition of new medications in recent years has really given all of us a better chance at living a good and long life. It’s important to remember to not dismiss how deadly the disease can be. In a world where researchers are fighting for every dollar, I often worry about people not taking MS seriously, and saying “oh, well at least it can’t kill you” seems like a sure way for that to happen. My point of all this is not to scare people, but to get some admission that this disease can absolutely take your life. We owe that to people like my grandfather, who have passed due to complications with MS and we owe it to ourselves to acknowledge that our disease is serious.

Thanks so much for reading,
Devin

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 (18)
  • sr8412
    1 month ago

    Hello all, I’m Shawn. Came across this site, few things caught my eye. So I took the time and I read. In 2011 while serving in the Marines, I was hit with this news that my life will change. Served 24 years, so my mindset was no where close to anything medical. Never even heard what MS was. But my new job in life was to be come a student of the process, and to retrain my body and mind. I had seen over 10 neurologist. To try and under stand how and when. Found myself in a lot of what if questions, dead end searches. I departed my service and elected to not take any pharmaceutical meds, when I sat down with my Doctor and told him my plan, I listened to his perspective and I respected his views. His position is to give me the best medical opinion so I can enjoy my life. Makes perfect sense, but I’m not a big medication guy. I said, maybe one day it may change, but I have to try, I have great days and bad ones too, but I eat as healthy as I could. I monitor/record in my logs every day of my life. Positive and negative. I read up on individuals with this illness, and keep waiting for the news, they found a possible cure. I can still walk at my pace, I have a few canes and scooters to assist me, it’s now 2018, I’m 7 years being a student of this illness. I’m trying new things all the time and keeping a positive perspective. I’m grateful every day I wake up. I know this, no one gets off this planet alive, and natural disasters happen every day. I can’t predict my future, but I can prepare for it.

  • ShelbyComito moderator
    1 month ago

    Hi @sr8412, welcome to our community! I am so grateful you reached out and appreciate you taking the time to share a little bit of your story with us. Your positive perspective is so inspiring! You are certainly not alone as you go through this. We appreciate you reaching out and welcome you to do so anytime. Warmest wishes, Shelby, MultipleSclerosis.net Team Member

  • RobWelsh
    7 months ago

    MS has not been fatal to me, yet 😛 but I spend a lot of time sitting and laying around.

  • MArroyo
    1 year ago

    Devin, I enjoy ALL of your articles. Your honesty is so refreshing and greatly appreciated. I’m going to share this article with my MS Support Group this month. Thank you for being a great writer and for being so open with the challenges you face with MS. Maria

  • Devin Garlit moderator author
    1 year ago

    Thanks so much MArroyo, I appreciate that!

  • Monk
    1 year ago

    Thank you for your no nonsense approach to this topic. I wish it was discussed more in the greater MS world.

  • Devin Garlit moderator author
    1 year ago

    Thank you Monk!

  • Anonymouse
    1 year ago

    Thank you for addressing this important topic.

    Sure, certain cases of MS may remain benign for long periods of time. While individual outcomes are rather unpredictable, the facts are out there, unsettling as they may be. I’m a hopeful person. However, playing with language about “complications” doesn’t serve patients’ best interests overall.

    Thanks again, Devin, for tackling the tough stuff.

  • Devin Garlit moderator author
    1 year ago

    Thank you Anonymouse !

  • Polifax
    1 year ago

    This is a good one. While we should always try to see the glad half full, the fact is glass can be broken. Damn I hope that made sense.

    There comes a time to be rational, practical. For example I recently told a neurophsychologist that i was having great difficulty balancing my checkbook ( takes 6hrs). She asked me if i had a power of attorney and living will written up. Hubby and I stopped at the back to notarize both on the way to get my tysabri.

    Having been through both my patents dying processes I know the help that pre planning can give your loved ones. Its not always a question of pulling the plug so to speak, sometimes people just can’t mentally be responsible for decisions. Also with the HIPPA laws..if you have a loved one in the hospital and you need information.. you’d better be waving that power of attorney for healthcare or whatever it is called in your state.

    I Had about a year when I could not eat if I was home alone because of the chocking. Bladder and kidney infections check. Falls check. One other one you didn’t mention was cellulitis. I had that 2x in 2015 and my brother with MS also has had it twice. His was at his injection sites (copaxone), mine was after 2 bug bites.

    So it’s difficult to talk about this. But it’s a kindness to talk about it with your loved ones now.

    Thanks Devin

  • Devin Garlit moderator author
    1 year ago

    Thank you Polifax! You bring up important points, that aren’t easy to talk about for most, but can be crucial. Making appropriate plans for our passing is important for anyone, illness or not. It really is something that we can do now, to help ease our passing for our loved ones.

  • MArroyo
    1 year ago

    Yes, I agree. I checked off each of those items while reading Devin’s article too (except suicide attempts). In the past 6 months I’ve had pneumonia, a serious fall that knocked me unconscious and broke 2 ribs, multiple UTIs, cellulitis, thrush (isn’t that for babies!?). All of that is MS related of course!

    Devin, One thing that maybe should be added to the article is side effects from medications. I’ve had liver problems from interferons, destroyed immune system from Tecfedera. The side effects can kill us too!

  • Devin Garlit moderator author
    1 year ago

    Thank you MArroyo! A very good point, side effects can have a pretty detrimental impact on many as well!

  • littledeer
    1 year ago

    Thanks for this honest article. Agree with you 100%

    My Drs. have said those exact words- “It’s not fatal”, but I have wondered about possible complications.
    I’m surprised suicide isn’t higher. (If its ok for a little more honesty) i have talked with my husband, and we agreed, if I get to a point where quality of life is not tolerable,..i don’t think I will wait for further complications. Has anyone else thought of this or am I too out of line?
    Thanks

  • Devin Garlit moderator author
    1 year ago

    Thank you littledeer! I have thought the same way you have, as I think many have. I think with it being such a taboo subject, that statistics about that sort of things just aren’t there at the moment, but it would not surprise me if that number is much higher.

  • cmonteressi
    1 year ago

    I agree. If one were to do a root cause analysis, MS would be the final cause of a death. Yes other causal factors may lead to death, such as pneumonia, however these are causal factors with their origin being linked to MS.

  • Devin Garlit moderator author
    1 year ago

    Thank you cmonteressi! Appreciate you taking the time to comment!

  • Gracefullnot
    1 year ago

    Great post! Thank you for talking about the taboo, I totally agree

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