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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

  • MyLastDuchess
    5 months ago

    Angela,
    I’ve been there too. I had a malicious boss that actively tried to get me fired and blacklisted from working in my field where I live. Despite excellent reviews and awards for great work he did succeed in preventing me from changing jobs while he tortured me emotionally for over a year. He hated people with disabilities and was open about it. I went to my HR department about him and it appeared they did nothing for months but, through events I could never have predicted he was fired for his actions (HR did finally act suddenly, swiftly, and resolutely) and I was finally able to get disability. The treatment I received by him and many others at that time drove me to the brink of suicide. It’s been 5 years now and while I still suffer from my disease and I still have my down days I’m no longer in that nightmare and am so much happier. Please hang on. Wishing you all the best.

  • ClimbAngel
    6 months ago

    I know this post is a little old but I was reading on life expectancy and I have to be honest. I hope I leave this world early. The only thing keeping me here is the fear that I will go to hell if I commit suicide. I was diagnosed at 21 and am now 33 during the course of my life with this disease I have found that people just don’t care to understand. I have worked at multiple companies that have given me a difficult time with going to the Dr or receiving treatment even though I have made every attempt to be as open and honest about it with them. I am so angry that they make it almost impossible to get on disability for MS. When does quality of life become a priority. I force myself to get up every morning, shower, brush teeth and drive an hour to my job everyday while not only do I not have the energy to get through the day much less jump when my boss tells me to do something. My pain is crippling and it makes every task that much harder for me to do. I recently started on Ocravus after not being to a Dr in at least 2 years because my previous employer had a problem with me taking 1 day off a month for my
    Tasabri infusion. I started new employment and at first didn’t think I wanted them to know about my MS but as I started to decline I brought it to my employers attention and informed them prior to starting Ocravus that I am not sure how my body will react to the infusion or medication. I was off 2 whole days and now my employer is threatening my job and says I keep making mistakes but they cant show me any mistakes I have made. People don’t get how hard it is to try to keep up with daily tasks much less try to get time off to do what you need to. They need to quit making this about money we have a right to quality of life. I have been struggling trying to work while dealing with MS and Dr’s. I caught my boss laughing about my situation with another co-worker so this is definitely effecting me. If I find employment elsewhere the same problems are going to exist. I am really having a hard time searching for a positive and at the current moment I need to find a purpose to this life otherwise what is the freaking point. What could I possibly accomplish in life with this disease that would make it worth being in pain every single day. Sorry if this is a bit off topic – Angela

  • Devin Garlit moderator author
    6 months ago

    Hi Angela (@ClimbAngel ), I’m so sorry to hear about what you are going through. I very much understand. While it may not seem like the greatest option, you should talk to someone in your HR department, you do have protections there and you need to bring your boss’s behavior to their attention. Again, I know that can be difficult, but it’s important. That’s what the HR department is for.

    As for your feelings about what you can accomplish amidst the pain and problems you have, I’ll be honest, I feel the same way, and often too. For me, one of the best ways I fight those feelings is to find something, no matter how small, that brings you some joy, something that helps get your mind off of everything, even if it’s just for a little bit. Whether it be a show on Netflix or a book or a small hobby of some kind, I think finding something positive can help take the pressure off a bit and then it becomes a bit easier to figure everything out. Along with that, honestly, just talking to someone, even online, and venting can be tremendously helpful. Certainly feel free to reach out to me.

  • ClimbAngel
    6 months ago

    Devin,
    Thank you again for your reply. I cannot express how much it means to be heard. I have reached out to other MS communities in the past or on online whatever’s and never got reply’s by people. So I really appreciate you taking the time to. It means so much! I also wanted to let you know that I am in a much better place now mentally. I think I was just having a rough time handling being told I have progressed to Secondary Progressive MS and the reactions my body had to my Ocravus infusions made things harder. It has now been about 19 days since my last infusion my throat has just gotten back to normal so I am able to eat again normally. Spoke to my mom yesterday and she mentioned that depression is a side effect of Ocravus and that might be the cause or some of the cause to why I was feeling so down recently. I will eventually talk to my Dr about depression as I too feel like depression is something I have fought with through my whole life. I never thought I would make it to 33 and here I am. Just wanted to say thank you so much for all that you do for the people in this group. I know myself I would have lost my mind if you hadn’t reached out and responded so thank you sincerely.
    -Angela

  • Devin Garlit moderator author
    6 months ago

    Hi @Angela (@ClimbAngel), I understand your concerns. I still highly recommend seeing a mental health professional. They’re important to anyone with MS, the same way a physical, speech, or occupational therapist is. Doing well with MS really takes a team of doctors. Depression is as much a physical condition as problems with your legs or pain are, parts of your brain are affected/damaged by the disease process. Seeing the right person can help you deal with that, sometimes even by simply teaching you strategies and helping work with how you handle certain thoughts (again, similar to the way a speech therapist can help you speak better by teaching you strategies for that). I know there can be a lot of stigma to seeing someone for mental health, but it’s important to try to not fall victim to that. (I kind of write about that here: https://multiplesclerosis.net/living-with-ms/its-time-to-get-real-about-depression-and-suicide/)

    Remember to keep documenting as much as possible as well, and remember you have friends here, who have been through similar situations, you aren’t alone.

  • ClimbAngel
    6 months ago

    Hey Devin,
    Thank you for your reply I really appreciate it. I have started to reach out to MS groups because to be honest I don’t have much of a support group. I understand going to HR would be a good idea however my company is so small we have 12 employees and the woman who was laughing about it with another co-worker is the owner. For now I am going to stick it out until I can find a job with better benefits with a much larger company. Even though every day I have to see their faces I have lost every bit of respect I had for them. I did reach out to the National MS Society and found tons of resources including legal resources if this should become a bigger problem. I am trying to get Life Insurance so that in the event I should die my Husband will be ok and not stuck with a ton of debt. I also found out that some Life Insurance Policy’s do cover Suicide (not that I am going to but I like to know my options) the policy has to be active for at least 2 years prior to a suicide depending on the Life Insurance Policy. I haven’t really wanted to open that can of worms and discuss depression with my Dr because all I need right now is to be labeled with another condition prior to getting Life Insurance lol I have started painting again and have always been more on the artistic side. It has made a big difference in my attitude about everything. My step daughters dog has also been very helpful and makes me feel not so alone. She follows me everywhere almost like she understands how I am feeling better than most humans lol. She is a Husky and will just lay with me nose to nose and we stare at each other so I feel like she understands I am not well. I think I have just been thinking a lot about the future and its really hard to make any plans for the future because you don’t know when MS is going to cause more problems so I am super uncertain where I see myself. I am trying to get ready so everything is pretty much done when everything goes down hill. I don’t want to leave even like a disability application uncompleted because I know I am not at 100% mentally now and worry that I wont have the capacity to complete applications or even understand all of it when the time does come and don’t want to leave that for my husband to do. Is that silly?

  • Shelby Comito moderator
    6 months ago

    Hi Angela, never apologize for reaching out and sharing what you’re going through! This is a safe space to do so, and I commend you for being so open and honest about how you feel. Sharing experiences like this helps others in the community to know they’re not alone in feeling this way, too. It pains me to hear that you’re not receiving the respect and compassion you deserve at work. I can’t even imagine everything you’re going through on top of that, but please just know there’s always someone who’s willing to listen and to hear you. If you ever feel like you need help, don’t hesitate to contact the National Suicide Prevention Hotline at 1-800-273-8255 or online at http://www.suicidepreventionlifeline.org/ or any local options such as medical professionals, counselors, or support groups. Also, the MSAA (Multiple Sclerosis Association of America) can be a great resource for the MS community. Here’s their number if you’d ever like to connect with an experienced specliast – https://mymsaa.org/msaa-help/helpline-chat/
    Sometimes online support comes a little easier, and please know we’re all thinking of you and this community is here for you anytime you need a listening ear and support from others who understand. – Shelby, MultipleSclerosis.net Team Member

  • ClimbAngel
    6 months ago

    Shelby,

    Thank you for your reply. It is good to know that I am not alone. I feel like when I do post I am a bit blunt partially because I think there is enough BS in the world I don’t want to contribute more lol but also I feel like some things should be talked about bluntly. I do deal with some anger about the whole thing because I see young people doing things I cannot do and yes I feel like its so unfair. Most of the people I see in my age group have absolutely nothing to worry about other than their hair or makeup I find it difficult to relate to them. If someone does call the National Suicide Prevention hotline is it confidential? With everything going on now days with gun laws and mental health I don’t want to call and get flagged or whatever. I do own guns but trust me that’s not the way I would go out. I enjoy shooting its a way to blow off steam and to have someone threaten to take that away from me is ridiculous. I would never ever under any circumstance hurt another person.

  • isitms
    11 months ago

    Oh…in addition to the issues I listed in my previous post, I also have what I call a bubbly feeling inside my body. I have told my doctors but they have no idea what I’m talking about. Again, any suggestions?

  • Shelby Comito moderator
    11 months ago

    Hi @isitms – thanks for your question. I can imagine it must feel very frustrating to experience all of these symptoms for the last three years and still not have any answers or relief. While we can’t provide medical or diagnostic advice via the internet (for your safety), I commend you for reaching out here for help. We always encourage people experiencing new or worsening symptoms to let a doctor or a specialist know – I know you already have, but you may want to consider seeking out a second or a third opinion, if that’s an option for you. Additionally, these articles on feeling “bubbly” and some of the other symptoms you mentioned might be of interest as well: https://multiplesclerosis.net/living-with-ms/body-all-a-buzz/ ; https://multiplesclerosis.net/living-with-ms/embarrassing-questions-interview-urologist/ ; and https://multiplesclerosis.net/symptoms/

    I do hope these are helpful! Thank you for reaching out and please keep us posted on how you’re doing. I hope you get some answers soon. Best wishes, Shelby, MultipleSclerosis.net Team Member

  • isitms
    10 months ago

    I was in awe as I read those posts! The symptoms are exactly what I’ve been experiencing. I now have renewed hope. The last doctor I saw told me it was all in my head and that I should go home and get some sleep.

    I have made an appointment with a neurologist and I can now clearly describe my symptoms. Out of all the doctors I’ve seen, none was a neurologist. I’m expecting answers this time!!!! Thank you so much for letting me know that I’m not alone.

  • isitms
    11 months ago

    I’ve been going to doctors for over three years now with numbness in my hands and feet that has progressed to my legs and arms. I have muscle stiffness and brain fog. I also have urinary urgency, which has also worsened, and that I had attributed to having children. After doing some online research I’m beginning to suspect MS might be the issue. Do you have any suggestions?

  • sr8412
    1 year 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.

  • Lilgrinch1
    7 months ago

    I started with tingling in the sock area approx 2000.I was basically diagnosed with MS but was told a spinal tap was needed.I don’t do needles so unless life threatening I opted out.All the meds were needle related and just couldn’t do it!I am also not big on meds in general so have not tryed any MS meds.Symptoms were not to bothersome until last year or so.I may need to try some of the newer meds as my leg spasms and right hand shakes.I partially regret the no meds thing but can’t look back now.Anyone else opted out of medications?

  • Shelby Comito moderator
    1 year 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
    2 years ago

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

  • MArroyo
    2 years 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
    2 years ago

    Thanks so much MArroyo, I appreciate that!

  • Monk
    2 years 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
    2 years ago

    Thank you Monk!

  • Anonymouse
    2 years 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
    2 years ago

    Thank you Anonymouse !

  • Polifax
    2 years 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
    2 years 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
    2 years 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
    2 years ago

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

  • littledeer
    2 years 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
    2 years 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
    2 years 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
    2 years ago

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

  • Gracefullnot
    2 years ago

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

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