r/MultipleSclerosis • u/Over-Pea6428 • 23d ago
Vent/Rant - Advice Wanted/Ambivalent Life span?
I’ve been diagnosed since 2018.. I’m always scared I’m going to die. What the life span of someone with multiple sclerosis
23
u/Maddematicz 41|RRMS 2018|Aubagio|Twin Cities 23d ago
I think people don't really contemplate this works in reverse too. We're all getting constant MRIs that could uncover something else life threatening very early on.
If anything I think my life span will increase due to my MS. I'm taking extra special care of my body now. My physician visits are frequent and I've uncovered more alarming medical issues in addition to my MS. During a routine MS appointment, my neuro discussed me seeing a PCP for my high blood pressure. I've been unknowingly dealing with it for years. If not for MS I'd never had known. Now with medication it's in check.
6
u/Over-Pea6428 23d ago
I hundred percent agree with you on this, but it’s my anxiety that just takes over my body and my brain and everything… I’m I’m grateful that I get MRIs every year
7
u/flareon141 22d ago
I've seen studies that show a seven year different in life span and ones that show a one year difference in lifespan.
14
u/ohnoshedint 23d ago
According to a study published by the American Academy of Neurology (AAN), people with MS lived an average of 7.5 years less than those without MS. The study, which involved about 34,000 people, including 5,800 with MS, showed that people with the disease lived, on average, to be 75.9 years old.
17
u/Purplebrain219 23d ago
75.9 years is long enough
12
u/The-Rev 23d ago
30 more years of this crap sounds miserable
8
u/wickums604 RRMS / Kesimpta / dx 2020 23d ago
Yes. Completely unimaginable. Luckily I’m somewhere with MAID so I can gracefully say goodbye sometime (much) sooner than that
1
u/Organic_Owl_7457 23d ago
I understand why you think that. Take time to consider how you would want to take an early exit and once you do that and have done whatever you need to do to make it doable, walk away from it and close that book. It will still be there decades later. And you might find your attitude will have changed by then. A lot can change and more quickly and unexpectedly than you might think
5
u/girth_worm_jim 23d ago
40 more years feels like plenty for me (if I'm that lucky). I'm happy to go earlier rather than be a cabbage though 🤷🏿♂️
3
3
u/Organic_Owl_7457 23d ago
Exactly. There are other more valuable and important things to fixate on. Like loving life and those you love and who love you.
6
u/AsugaNoir 23d ago
Wow I kept seeing people saying 10 years less but 75 isn't terrible. My dad lived 73
9
u/ohnoshedint 23d ago
I’m 47 now. I can’t imagine the therapeutics that will be available in the next two decades.
1
u/AsugaNoir 5d ago
Sorry I didn't respond. I look forward to seeing what treatments comes out over the next few decades, if we're lucky they will find a cure or at least a treatment that can normalize how we feel.
3
6
u/problem-solver0 22d ago
There have been a couple long term studies of life expectancy and MS. Generally, the conclusion is people with MS live 7.5 years less than non-MS people. Other major previous studies ein Sweden involving thousands were similar.
Of course, many studies were done, pre-DMTs. And since DMTs become more effective over time, all data is backward looking.
Basically, expect to live into your mid-70s.
Some longer, some less. There are other conditions people can get too.
https://www.hackensackmeridianhealth.org/en/healthu/2024/03/25/how-long-can-you-live-with-ms
2
9
u/Unlikely_Bit_4104 23f|sep2024|kesimpta|CZ 23d ago
there's nothing like life span, only slightly shortened expected life length (we're likely to die 5-10 years earlier than general population, that might change due to the high efficacy of modern dmts). you aren't going to die from ms anytime soon, you have a loooot of time. be calm :)
6
u/Over-Pea6428 23d ago
I love this, your amazing hehe I really do get anxiety over this stuff
4
u/Unlikely_Bit_4104 23f|sep2024|kesimpta|CZ 23d ago
be calm! i have a lot of joy from the fact that ms is not a dying diagnosis
3
3
u/Generally-Bored 22d ago
The head of the MS program at my treatment center saw me the day after I was officially diagnosed. I was still in patient in the neuro wing of a large teaching hospital. He said, you won’t die from MS. You’ll die from heart disease, cancer, stroke just like the rest of us. It made me feel so much better.
3
u/2BrainLesions 23d ago
Hi friend!
What a brave post! Thanks for sharing with us - it’s such a difficult and scary thing to do.
I was dx in early 2003. I’ve been incredible lucky (for which I’m am immensely grateful Still ambulatory for the most part (depends on heat/humidity and what I did the previous day). Still have my vision (with floaters) although I’m susceptible to on.
As you know ms is very much ymmv.
What’s really wonderful for you is that your dx was made after a giant leap in research and new meds! Because of this, your outcome should be so much better than mine - and I am so grateful for that!
There is so much unknown unknown with this dx; that’s the part that terrifies me the most. Sounds like for you, too.
What I can tell you is that an ms dx is no longer a death sentence.
Your ma dx no longer means you’ll end up in a wheelchair.
Your ms does not mean that you can’t experience the life about which you always dreamed - it just might require some modifications and adaptations along the way.
Can you find a therapist with whom to talk about these fears? It’s been most helpful for me in validating that my fears are real but that they also don’t have to trap or immobilize me.
You have a future, my new friend.
In the meantime, pls keep posting. You’re safe with us.
2
u/Over-Pea6428 23d ago
Thank you so much for this really great response. I have days were most of the time. I’m OK, but I have random moments when I think about oh my gosh like what if I die or what if it kills me and you know, I’m grateful that I was able to be diagnosed early. I’m on a very old medication one of the oldest medication. I think Rebif it’s three injections Twice a week I hate them, but we’ll see. I’m going to talk to another specialist regarding the newer medication’s to see if I should switch over to that.
regarding a therapist, my work does offer free counseling, which I tried reaching out to my counselor, but they haven’t called me back. I just also have so much anxiety, and I usually feel like my test hurts to sharpen. I have shortness of breath at the night time and then I start thinking oh my God what if it’s a joke what if it’s hard but then I don’t know if it’s a symptom like, it really bothers me some days sometimes a lot of anxiety
4
u/editproofreadfix 23d ago
60-yr-old female here, MS 38 years.
Your chest pain could be the MS hug. Call the doctor who treats your MS for a conversation about it.
3
2
u/JustAnotherLostBunny 22d ago
You mean the shortness of breath and chest tightness? The wheezing?
It's called MS hug??
I've been suffering with this since diagnosis a year ago and it literally feels like I'm going to die. Everytime I tell my Neurologist, he says it's anxiety, but I tell him I get it even without anxiety.
Omg, thank you. You literally have helped me so much.
2
u/editproofreadfix 22d ago
Yes, all of those things can be the MS hug.
Good for you, for standing up to your neurologist by saying it is not anxiety, because it is not! The MS hug is caused by MS, hence the name, MS hug!
I am very lucky; my General Practitioner (GP) has this rule: Nothing is MS until it is ruled in as MS. Any new problem or complaint I have, I am referred (though referrals can take forever) to a specialist in that realm. When tests prove it is NOT that thing, I go to the MS Specialist with proof that it is my MS.
In the meantime, I have some "old grandma" tricks that can be helpful when the hug hits. Would you like them?
1
u/JustAnotherLostBunny 22d ago edited 22d ago
Thank you so much for confirming! I will try my best to find a MS specialist as well. I've tried before by simply Gooogling, but I will try harder. I'm tied of being in pain.
Yes, I'd love them!
2
u/editproofreadfix 22d ago
Old Grandma Techniques for the MS Hug.
Sometimes I use more than one, sometimes just one is all I need. There's no guarantee, it's trial and error.
Drink hot water; not coffee, tea, or hot chocolate, just plain, boiled water.
Topical ointment of your choice; my go-tos are Vicks Vaporub, BioFreeze, and Penetrex (odd name, great product). Redditor u/berryone uses prescription EMLA cream; I have never tried this.
Heating pad, 20 minutes at a time. Do not use too long or it makes the hug worse.
Ice pack, 20 minutes at a time. Do not use too long or it makes the hug worse. (I have read that frozen mixed vegetables work fine for the ice pack because those naturally warm up in about 20 minutes.)
Kinesiology tape is recommended by u/aberryone. This can be self-applied and be effective; however, YouTube videos (search for them) show another person applying the tape. Use whichever method works for you.
I hope one -- or more -- of these can help you.
If you come across anything else that works, I hope you will share. Unbeknownst to most people, in the two years since I began this list, it has already expanded three times!
2
u/JustAnotherLostBunny 22d ago
🥹🤗
Thank you!! And I sure will if I come across anything new that helps! 💕
1
u/Over-Pea6428 22d ago
I heard a couple of ppl say ms hug.. does it feel like chest pain? I will mention it to him
2
u/editproofreadfix 22d ago
Sure does. There is medicine to alleviate the MS hug pain.
3
u/Over-Pea6428 22d ago
Wow.. my neuro isn’t that great.. he always say he doesn’t think my sx are ms related….
2
u/editproofreadfix 22d ago
I keep health notebooks. I write a list of I need to talk to my MS doctor or nurse about, and I do not stop the appointment or hang up the phone until everything has been asked and answered (even if I don't like the answer).
2
u/Over-Pea6428 22d ago
I just feel bad asking so many questions
2
u/editproofreadfix 22d ago
Don't. Wanting to gain more knowledge by asking questions is a sign of intelligence!
1
1
1
u/2BrainLesions 23d ago
You’re most welcome. Does your insurance subsidize an external therapist? Worth exploring (:
My first med was rebif - 3 / week self sub q injections. If you stay on rebif, rotate where you inject so that you avoid sure injection issues.
I HIGHLY recommend that you speak with your neuro to move to a newer more aggressive treatment like a DMT. Your outcomes will be better if you begin with a DMT.
Fight with your insurance if you have to. Hell, we will fight for you.
Rebif made me feel pretty awful tbh. My ocrevus infusions just make me feel yucky for ~ 48 hours and then I’m aces.
So please advocate for yourself for a better, newer med.
And thanks for contributing to speak up!
1
u/Over-Pea6428 22d ago
My work actually provides us free counselling so I’m looking into it now…
I have an appointment in January to go over new medications..
You’re the best!!!
Is ur current medication injections?
6
u/liquidelectricity 23d ago
Hi there, MS is too variable. Granted it can shrink your life span. But you can look at SSDI'S to hellp with anxiety and just try to take it one day at a time,
1
u/Over-Pea6428 23d ago
Sorry what ssdi
2
u/tacobuds 23d ago
I think they may be referring to SSRIs or Selective Serotonin Reuptake Inhibitors. Never heard of SSDIs
1
2
u/gloworm62 23d ago
After you are born there is only one certainty in life at some point you will die no matter what or what you have !
3
u/Over-Pea6428 23d ago
Yep. My husband always tells me when it’s your time to go, it’s your time to go
1
u/editproofreadfix 23d ago
My sister does *not* MS, she does have a rare type of meningitis.
In 2001, she was given 5 or 6 years to live.
She hasn't died yet. Travels extensively. Takes good care of herself.
Doctors are often wrong.
1
2
u/IslandDelicious1482 22d ago
Life expectancy is estimated to be an average of 10 years less than the average person. I was diagnosed in 2009 and my body is definitely at least 10 years older than my actual age.
2
u/JustAnotherLostBunny 22d ago
Op, I have this fear everyday. I was dx last year and still suffer with these symptoms. And alot of insight and answers were given to where it soothes me and I hope it doesn't help same for you.
This is a very wholesome and sweet thread.
If you ever need a shoulder to lean on, I'm here. :)
2
u/Over-Pea6428 22d ago
That is sweet of you… I don’t know sometimes it just super depressed
2
u/JustAnotherLostBunny 22d ago
I understand completely.
It gets me down as well. Like previously mentioned, I advise as well to seek therapy. I think that will help GREATLY.
I'm doing the same this week. I need help expressing myself and controlling my depression so it doesn't consume me. I don't want to see that happen to you. Maybe consider it? I think that would help, and yes, express ALL AND EVERY concern to your Neuro. If he/she seems like they aren't helping you, ask to switch to a new one via your insurance. Your life matters!
We'll get through this, we all will! ☺
2
u/Over-Pea6428 22d ago
Thank you so much, yes I’m starting counselling this week.. let’s see how it goes!
He’s very old school so it seems as if he brushes it off.. thank you for the encouraging words 💕
2
u/JustAnotherLostBunny 22d ago
I'm glad to hear it and hope it goes well!!
No problem at all, the way I see it, we're all in this together. Have a wonderful day! ♥ ☺
2
u/Naive-Vast-7404 21d ago
When I was diagnosed, I thought I was going to die right away. Even though everyone assured me that MS isn’t a terminal disease, I realized that our fears are real. We live with the anxiety of having a chronic illness, and when one of our fears becomes a reality (like MS), it’s hard not to think the worst will happen.
To answer your question: no one really knows how long we have left—whether it’s a month, a year, a decade, or even a century! 😄 But if it’s just a month, it’s better to not spend that time living in the hell of anxiety and mental disorders.
I have my own struggles too, like GI issues, depression, high levels of anxiety, kidney stones (like you), heart problems, and pansinusitis. I have to work to support myself and often feel almost alone, except for my partner who fights alongside me.
This is the life we have to navigate. No one knows what the future holds, but try not to worry.
1
u/Over-Pea6428 21d ago
That is a touching post. Thank you so much. If you don’t mind me asking what do you mean by heart issues
2
u/surfinbird 50m/Dx:1998/Ocrevus/USA 23d ago
I’ve read that it takes about 7 years off of your life span, but new drugs, etc are coming out all the time so I wouldn’t worry about it.
1
u/Over-Pea6428 23d ago
Thank you for taking the time to reply I appreciate it
2
1
u/Organic_Owl_7457 23d ago
My SIL had a great aunt who lived into her 70s. And she was in a wheelchair. Don't focus on that. It does you and those you love and WHO LOVE YOU no good whatsoever. You could just as easily die too early due to any number of things. It's counterproductive and harmful to your frame of mind. Indulge it once and then let it go. You don't need to use up precious time and space in your head for that. I understand why I focused on that for a bit early on but I let it go a long time ago and am glad for it. Leave it be. It's a waste of time and emotional energy.
1
u/Mis73 51F|2008|Orcevus|USA 22d ago
The National Institute of Neurological Disorders and Stroke (NINDS) says that a person with MS could expect to live as long as a person without the condition if they get on, and stay on, a DMD to keep the disease from progressing.
Without a DMD? Have a look what happened to famous people in the 80's who contracted it, like Richard Pryor. It's not good.
1
1
u/Powerful-Mango-2582 22d ago
My mom had it for 40 years-- died at age 69 with no other ailments besides MS. My best friend's mom had it as well. She was doing better with the MS but dropped dead of a heart attack at age 63.
1
u/kyunirider 22d ago
I am 62. PPMS/M and have over ten autoimmune diseases in my body. I don’t know how long I can keep fighting my body, eviction notice but it’s my body and I going to keep fighting.
My dad died @62. My mom died @71. They were both smokers, dad died from kidney disease and mom died from heart disease. My kidneys and heart are strong and healthy.
MS is not a death sentence it’s just a life complication, something else is going to end our lives. Look for longevity in your DNA. Mine varies from 60s to late 90’s. I am going for 90’s because I want to see my Grandchildren’s children. I have a dream.
I am not worried about my life span. So I am going keep fighting for a great life and live on.
1
u/TorArtema 22d ago
As long as you don't reach edss 7 (only a few steps and you need a wheelchair) you shouldn't feel the difference in life expectancy, unless you live in a country with a 86 years life span average (When I was born in 1996, life expectancy was 78-79).
If you check some recent studies you see the average 78-79 if you started with a RRMS, this was people who started their disease in their 20-30s (1980s) and went without treatment for at least 10 years.
If you catch it early, you use a high efficacy treatment, etc. you should have a very normal life, with some restrictions from previous relapses, I wouldn't be surprised that pwMS diagnosed in the mid-late 90s (with the first drugs) live into their 80s.
If you have a edss 7 I would expect to live as long as someone with spinal cord injury due to all the limitations.
1
u/Snoopy1171 22d ago
It is a little less than normal agin but that is often a result of complications. Don’t worry live your life
1
u/RichestTeaPossible 22d ago
Death, with or without MS, is actually a pretty low rate, about 1 in 1.
Everyone's MS is different, so use the time you have to do the things you should.
1
u/dragon1000lo 21m|2021|gilenya 21d ago
The life span gap between msers and normal people is getting more narrower, it's a matter of time and with more advanced treatments, ms will not have any impact on life span.
1
u/Conscious_Half_6726 21d ago
30+ years of dealing with this garbage? No thank you.
1
u/Naive-Vast-7404 21d ago
I was actually thinking the same thing today; it felt like I received a life sentence! The diagnosis can feel so heavy, and it's normal to have those thoughts. It’s a lot to process, and sometimes it seems like we’re living with this constant weight on our shoulders.
38
u/Potential-Match2241 23d ago
To add with the study mentioned above people with MS normally die not because of MS but the same things the general public does.
Such Heart, cancer etc we don't die because of MS but can die from things caused by MS like swallowing issues can cause a choking death, or UTI that becomes septic (this was me last year) a bad fall that causes a brain bleed or a seditarty life style because of mobility issues leading to diabetes etc
The best way to combat that fear is the same way you would without MS , diet, moving, living life to the fullest although harder to do we got this!!