Dying from MS

[grannyhotwheels]

Sorry about the title for my question but I really didn't know what to put...

When someone says that my (insert relative or friends name) died from MS what do they mean exactly?  How does MS kill you?  I have PPMS and RSD... I have what seems like at least 100 symptoms between the 2 but I don't think any of them are life threatening by themselves... What am I missing here?  

It also seems like this person that has passed on always has a progressive form of the disease...  I understand that if a person became completely immobile from the MS they could die from pneumonia or something like that but the coroner wouldn't put MS down as cause of death would he?  He would put pneumonia, am I right?  

This has me confused and very worried at the same time... One of the reasons I'm even talking about this is one of my sons friends lost his grandmother the other day and he told Zach she died from MS... Now my son is really upset and wants to know how much longer I have to live... I would like to say at least 100 years but now I'm not so sure...

Any comments would be greatly appreciated...

GOD bless you all,
Carol

[zoefromsussex]

I was going to say pretty much exactly the same as rendean re the complications and the fact that years ago people didn't have the treatment options we have nowadays. I think quite a lot of people genuinely believe MS is a killer because unless it affects you directly, not much is known perhaps?
All the best to you, Zoe

[sheilia83]

My mother passed away at the age of 49. She had the worst Ms (PPMS) Its a horrible disease is all I can say. She had it probley since she was 21. When I was 5 my mom woke up and couldnt move her legs that was when we found out she had it.She had to use a walker. Then when she turned 30 she was totally bed fast lost controll over her bowels and bladder and her vision was messed up. When she turned 47 her hand functions were gone. She had to be hand feed. She had a terrible death at 49 Dont believe the cause of death was MS her large intestine ruptured and thats what ended her life....I think the reason that people say that MS is the cause of death is because when u lived with and seen what the disease can do to a person You end up hateing the disease really bad The MS was the reason my mother died If it wasnt for the MS she'd still be here. I lost so much from my child hood because of that disease. She lost so much of her life from that disease. She missed out on so much because of it. She couldnt go no where for years because of the ms she didnt have much of a life she couldnt come tuck me in the bed help me with my home can u imagine how that made her feel as a mother not being able to help her own child or do anthing for her own child. I miss her so much tho.... but people are different and know a lot of people with PPMS dont pass away from the same thing and a lot of people live longer than 49 Maybe my mother just got cheated out of life.

[shoshin]

There was a study on this published recently: http://www.msif.org/en/research/ms_research_news/relative_mortali.html

The researchers found that "Encouragingly the study reported some of the longest median survival times in MS, with patients living to an average age of 77 (79 for women and 74 for men). However patients did still die 6 years younger than comparable adults in the general population."

"No evidence of increased survival over time was found when improved survival in the general population was taken into consideration." I'm not sure exactly what this means. Maybe that they are not finding that DMDs are lengthening lifespan and the only lengthening in lifespan of people with MS corresponds with generally longer lifespans from general improvements in health at the population level?

As others said, very few people probably die directly from MS in terms of having a lesion in a really bad place, but it clearly does contribute to a slightly shorter lifespan either indirectly (e.g., from side effects of being bedridden) or perhaps more directly through some extra wear and tear on the brain.

Clearly MS does not dramatically shorten lifespan and there's no need to worry excessively. I hope your son's worry is alleviated after reading the info on this thread.

sho

[Yankeesfan4life]

You very welcome Jean, I always think of my Dad telling me that on my worst days, best to all of us always  and have wish everyone a awesome  Labor Day weekend.
Michael

[jean_619]

To clarify, I meant that what Yankeesfan4life wrote was a wonderful story.  =)

[jean_619]

Wonderful story!  Thanks for sharing it.

Jean

[Yankeesfan4life]

My Mom was Dx in 1970, she was on daily injections in and out of the hospital. They told my Dad in 1973 she had 6 months to live, he put Dr. up against the wall and said 'we have 6 kids and that isn't gonna happen to my wife". Well, 41 years later my Mom is still alive, has had minor flare ups over the years, sometimes I think she is having better days then I. As my Dad said and many do, "two things in life we can be cetain of ,we will be born and we will die". All the best to you Carol, God Bless and prayers go out for all of us.

Michael

[grannyhotwheels]

I've already decided that I'm going to let my son read this for himself... I think he will feel a lot better reading it with his own eyes... Especially Bobs...

Thanks everyone,
Carol

[jujuminx]

If we were on facebook Bob I would like your comment and give it a thumbs up!

Julie

[COBOB]

Life is terminal disease, in the end we all die. In biology, they teach that: All organisms attempt to reach homeostasis and and when they do, life ceases.  So I asked our County Coroner and this was the explanation I got:

There are "proximate cause of death" like the initial injury that led to a sequence of events which caused the death of the victim and the "immediate cause of death" such as the injury or disease that finally killed the individual.   Think of a being struck by a car last week that starts an infection that leads to death by sepsis today.

There are also "mechanism of death". This term describes the altered physiology by which a disease or injury produces death (e.g., arrhythmia, hypoventilatory hypoxia, exsanguination/bleeding out, etc).

The "manner of death determination" deals with the legal implications superimposed on biological cause and mechanism of death:  Homicide, Suicide, Accidental, or Natural causes.
When the manner of death is by natural causes, the most common causes are:  Coronary Artery Disease, Pulmonary Embolus, Myocarditis, Aortic valvular stenosis, Berry aneurysms, Intracerebral hemorrhage, Perforated peptic ulcer, Anaphylaxis (Type I Immunologic Hypersensitivity Reaction), etc.

With MS,  one "cause of death" could look something like:
Age: 95
Manner of Death:  Natural Causes
Mechanism of Death:  Hypoventilatory hypoxia
Proximate Cause of Death: MS with immobility leading to:
Immediate Cause of Death: Pulmonary embolism

The point is that most people with MS dies from the same stuff (and at the same age) that kill everyone else.

Bob

[anon07072023]

The long-time boyfriend of my partner's mom died.  I believe he had PPMS, unfortunately, at the time, I wasn't very familiar with MS and the different types of it.  So, I actually can't say for sure if it was the primary progressive type or not.  Little did I know that a few years down the road, I'd have the same thing.... But anyways, he passed away before he was even 60 yrs old and it was from complications from MS.  It was related to have severe bowel problems.  

-Kelly

[Lulu54]

There is a very rare form of MS that progresses rapidly and is always fatal - sometimes within a year of dx.  As I said, that is very rare.  

We often say around here that MS won't kill you, but at times with the problems you might wish differently.  Everyone is right about the secondary illnesses being the cause of deaths in PwMS.  To the outsider, it might appear that MS causes death, but it normally isn't the case.

I hope you can get this through to your son so he can put those worries to rest.

hugs, L

[nancihelp373]

Hi Carol,
   Most all of MS pts do not die from MS. There is usually a secondary diagnosis (EX: Pneumonia, cancer etc... ) The reason people die from the secondary diagnosis is because a person with MS is working 24 hours a day to combat the disease. When another one strikes our bodies can't fight it all. MS will take a few years off the normal life expectancy in most. If it leads to respiratory problems that could cause death otherwise the disease that may kill you will be secondary.

I am sorry you are having so much trouble Carol. It must be so worrisome. I was recently diagnosed as you know and have yet to wrap my head around anything.

I wrote a paper about MS and no where did i find that MS in itself kills you. Try to relax ( easier said than done ) and enjoy what is good in your life. I hope i live by that too.

I hope this helps

xxoo

[grannyhotwheels]

Thank you all for your comments... I guess his question just kinda stumped me a little... I really don't think about death... I know where I'm going when the time comes and that's all that matters...

After he asked me that it got me to thinkin a bit... (One of my downfalls for sure) lol... Since being diagnosed with MS it never entered my pea brain that it could kill me...

I don't associate it with things like cancer or heart disease etc... So It just never crossed my mind... My biggest concern was how long til I'm in a wheelchair... It of course didn't take me too long to get the answer to that one either...  

Again, thank you all... I just love this forum so much... I know I would "die" without all of you!!!!

I'll be praying,
Carol

[zenhound]

When you read things from the various groups, you usually see a qualifier in their statements that MS isn't fatal, such as "...not typically fatal." To me that would insinuate there's a slight chance of dying from it.

I guess if you get a lesion in an area of the brain that controls something vital then you could die, right? Getting spasticity in your heart would be pretty fatal I imagine.

I googled for a few minutes but didn't find anything right off. I've always kind of wondered too.

[RazCarver]

from everything I've read,  life expectancy of PwMS is nearly the same as everyone else. I think thats about 80 years in the US. unless it is the very rare rapidly progressive type.

I have a friend that works for hospice and she says ' you don't want to have MS' as if anyone does? I tell her I don't want anything but there are worse things. at lest in my thinking now. not that MS is great either.

when my SO died and when my mom died, it was the funeral home that asked what the cause of death was and what I told them is what was put on the death certificate. I found this really strange, but thats the way it was. I said ah, doesn't a doctor have to tell you that. seems not, unless its not expected.

so it could have been  pneumonia but they put the disease down as cause.  In all honesty no one knows how long they have to live. All any one has is this moment now. I know that sounds trite - I don't mean it that way. it is how I deal with living now and not get frecked about how or when I'll die.

I don't think you really need worry. you could ask your doctor about it the next time you see them, i guess.

maybe that isn't much help. its just what works for me. if i'm worried about tomorrow i can't live today.
Raz

[HVAC]

I think I read 5% of people die of MS.

Alex

[rendean]

Carol,

I think you are track with the MS "killing you". It's usually complications from MS symptoms that cause a death , pneumonia being one of them. Also, MS isn't the same condition with no treatments that anyone who is a grandfather wouldn't had access to years ago.

As for the cause of death form the coroner, it depends what size town you live in etc.  The coroner in my relatively small town has been the coroner since we moved here 18 years ago, he also ran the only funeral home until a few years ago. Many coroners in smaller towns, who do not do an autopsy , at the family's request, based their cause of death after speaking with the local doc and what he was ill with last.

I have read many sources that say having MS only shortens ones lifespan by 2-3 years.  So reassure your son that you have ways of treating MS that didn't exist for these older MS patients but that you are reaching good medical care and hope to live to be old enough to see his grandkids.

Ren

[tripnstumble]

Well, I sure can't answer much other then for one symptom I have which is swallowing. I have a very hard time sometimes and food/drinks or pills have gotten stuck and I have not been able to breath. Thankfully I was able to get it back out. So I assume that could be one way.