"You can": In most cases m.s. those with m... - My MSAA Community

My MSAA Community

9,063 members20,800 posts

"You can"

Fattius profile image
34 Replies

In most cases m.s. those with m.s. usually live 5-7 years shorter and in rare cases it can lead to death.

Written by
Fattius profile image
Fattius
To view profiles and participate in discussions please or .
34 Replies

I read that too somewhere, about MS shortening your life a few years. Although, there is a woman who lives across the street from me who has MS and she's 85. Hasn't shortened her life so far. So even the prediction that someone's life is shortened by MS isn't always the case. There are so many variables to this disease, I don't know if anything is true across the board, at least as far as final outcomes.

Fattius profile image
Fattius in reply to

My sentiments exactly! Suggestions that all are the same and circumstances are remotely comparable is ludicrous. 85 is the body I'm left with. Negligence on the whole has ment my suffering is barely insufferable. If no two cases are alike, then surely this information hasn't been kept secret as well as these naptime docs inability to make sound healthcare choices. Consensus points forwards the latter. Happy places, mind and body, have made many simple. By this i mean simply ignorant. I can go on with these cartoon characters that have kept me entertainingly and overwhelmingly angry. Some will live, some will die, and neither flesh nor spectre will persuade a simple mind. Rainbows and Puppy farts.lol

Peruzzot profile image
Peruzzot

If that is even remotely true, based on my family history, I've only got about 10 more years to live. Very few on either side of my family have lived beyond 75. I have a very long family history of diabetes types I and II, cancer, (You name it, it's there.) poor food choices and lack of exercise have shortened the lives of many in my family. Very few have made it to 80 and only 1 that I know of has made it to 90. I'm eligible for full retirement in 6 years. That leaves me 4 years to enjoy retirement before taking up permanent residence in some cemetery somewhere.

I'd really like to know more about those stats. Is the shortened life span due to poor health choices, other diseases, accidents, or complications due to having MS. Stats can be made to say anything without raw numbers and other relevant information to go along with them.

Fattius profile image
Fattius in reply to Peruzzot

Meant to not give people a map but dispute the fallacies of the rainbows and puppy farts kind of discussions. Not talking out of my ass often times walk into a conversation only to smell shit. Point being is that complacent thoughts bought or sold are not helping anyone.

kycmary profile image
kycmary in reply to Peruzzot

God our heavenly father is the only one who knows how many days we have to live. & I'm glad. Mary

Peruzzot profile image
Peruzzot in reply to kycmary

That's why I have so little credibility (not sure that's the word) in blanket statement stats like that with so little (in this case zero) backup info to go along with them.

Fattius profile image
Fattius in reply to Peruzzot

ncbi.nlm.nih.gov/pmc/articl...

Fattius profile image
Fattius in reply to Fattius

Just happened upon. I seen this a while back and like ive said from the beginning, of I'm full of shit call it. I read and try to learn a little of everything about the things that interest and pertain to me. As I've also said I try to be a fly on the wall but when someone politely asks me to hold my toungue, which doesn't happen that often, I can almost guarantee I don't tend to scrutinise people for insecurities about the things I say! I am the fly named Pariah and I have a way with my words. 😂😂😂 I have no agenda, I have lived with this also! If I am asked to leave for whatever reason that will be cool. Only I rather fancy human interaction as much as the next guy/girl/etc. ! I've always written the important stuff (Whatever I'm Feeling) I write lyrics in the same manner. Can't win em all. Fattius is me for good or worse.

Peruzzot profile image
Peruzzot in reply to Fattius

Thanks for the link and the information shows just how ambiguous the stats are and even the researchers admit that in the article. Although your memory of the article was a little off. I found the spot that you were trying to quote...lifespan is 7 to 14 years shorter...but not necessarily directly related to having MS. Other factors come into play that the article does mention.

Here is what I zeroed in on in the article:

"Although a large amount of data on mortality has been gathered over the last 40 years, the lifespan of the general population is increasing and the care of chronically disabled patients has improved consistently, making comparison of datasets acquired over time problematic. In addition, the improvement of methodology and the increased duration of follow-up in recent studies, accounting for the large variability of mortality observed, make the task of reaching meaningful conclusions even harder. A possible way to overcome these difficulties and try to address appropriately the many unanswered questions on mortality is to calculate the reduced lifespan compared with the appropriate controls in the appropriate general population. In the future, it will be important to be able to assess the inherent strengths and weaknesses of each approach, and to standardize the way we collect data on mortality and causes of death, in order to make comparisons among studies more easily accessible.

Survival still represents a poorly described aspect of the disease, largely avoided by MS neurologists. It has never been used as an outcome measure when assessing the effect of treatments, although data from long-term follow-up clinical trials have recently highlighted its importance. The use of all-cause mortality as a long-term outcome measure in patients with MS has advantages. It eliminates the need to differentiate among specific causes (e.g., accidents, suicide, and medication-related mortality). In addition, it is not dependent on the frequently limited ability of the doctor to decide on a specific cause, and it simultaneously takes into account any deleterious effect on survival from treatment. Finally, it allows detection of whether the benefit of an immunosuppressive drug is offset by increased death from infection or cancer. We believe that the long latency of mortality as an outcome is offset to a degree by its unambiguous face validity. It therefore represents an attractive long-term endpoint for MS RCTs, usefully combining the net impact of treatment efficacy and adverse events."

Fattius profile image
Fattius in reply to Peruzzot

I understand no implications of my claim, but I am rationalizing the point. Nobody know's a damn thing about any of these situations unless u live them, in which many cases they have. I did not quote only pointed out that others budgets dont call for leniency. It's the happy way or the highway! If I'm deserving of a correction I will own it as I've said. I was admitted to the e.r. displaying stroke like symptoms (seizures) and told I was fine. Continued to have them for a month. That was 2013 and I had been told it was work and stress. 2017 I was having seizures again and have been having escalating exasterbations since then. Moderate to severe amount of lesions were back then. Warped mind, body, and perception on most days. Point being things happen to u and i, the difference is my brain damage has altered my life and those around me.As I'm sure it has many others. It's not predictable or debatable that reaching is what I used to do. There is no rule book for this beast and I've been changing more and more. Last year had my moment of weakness and I'm still occupying space! I shall proofread my material again next time and try to be more clear in the scheme of things. Thanks for pointing out that brain fart of a typo. Nonetheless, as I've said I haven't intended to stir the pot but if intentions are to lead newbies into believing that the happy thoughts will keep your beast at bay, then considering letting them know that new symptoms are compounded and if anything is taken from these posts then great if not there are very knowledgeable people who can help!!! (Many here!) If your not getting the results u want for your health then don't stop, I kept giving up on these magicians that told me nothing was wrong and I've suffered for it. Depression and anxiety have all but diminished my character but brain and spinal damage is real and no matter the outcome, I am going on ignorance for everyone else as they are going off of a distaste for my words. I am complicit with knowing that others share my symptoms, not with the fact that I have to defend the fact that consensus says my thoughts are strewn about. But thats........Me.

Peruzzot profile image
Peruzzot in reply to Fattius

We're all brain damaged. That's why we're here. Some of us dwell on it and some, like me, choose to use our twisted senses of humor to make fun of it. Those who can keep a sense of humor I've noticed are better able to deal with the frustration and aggrevation that comes with this monster that hides in our bodies rather than under the bed or in the closet. But everyone needs to vent every once in a while or we will lash out and not necessarily in a healthy way for us or anyone who just happens to be within reach.

Fattius profile image
Fattius in reply to Peruzzot

I understand this and offer my experiences as a tool to others I guess........ Do what I am unable. Comparisons are not without warrant, most definitely! As I am positive worse things can and probably will happen! I am not trolling points of view that displease me I am simply or maybe not simply conveying my point and frustrations at the encouraging statements, not necessarily towards myself, rather to the state and manor of which I act. Too early too comment on the productivness of these conversations? I will again continue to learn and grow and hopefully not a leopar to our cause.

Fattius profile image
Fattius in reply to Fattius

P.S. I've been "GIVING UP" since about 14 y.o. And still can't get it right!!! Lol

kycmary profile image
kycmary in reply to Peruzzot

When I was younger like late teens early 20's I was into statistics, I don't remember why but I loved reading about them. Knowledge is power that sort of thing, then I learned statistics were somebody else opinions! Somebody else ideas! I read them & decide if they make sense & do they pertain to me & my situation & go from there. Most of them I disregard.

RoyceNewton profile image
RoyceNewton

not exactly the most positive message to wake up to

Jackjosh profile image
Jackjosh in reply to RoyceNewton

I agree with you RoyceNewton that is very uncomfortable to read and could lead new people feeling even more depressed about there situation. Positive notes are best

Fattius profile image
Fattius in reply to Jackjosh

I'm sorry, if we can't have adult discussions where good vs. evil isnt the narrative. Speculation has no room in these discussions. If u have this burden then u already know things will never be the same and moral support isn't the same as cat posters with inspirational words. Not unfair or unjust in my thoughts. I want others to know that there will be plenty who doubt but only a select few that can not sympathise but understand anything outside their comfort zone. But again if the majority of sufferers are adults then knowing this how am I able to alter a state of mind which is already plagued with this hell. I do take part and try to help when I can, but I want these "new" people to know that just because others may not be suffering like u are that there are others who do take the things they say to heart and am able to genuinely feel for and understand the misunderstood. If anybody new reads my posts and takes away a misrepresentation of what I'm about and what this monster really is then I'm sorry, doctors will pretend to have interests that they swore or didn't swear an oath to at the forefront of their reasoning as medical professionals! Even on paper it doesn't describe the trials they may or apparently not be in for. Cults demand ears and minds to follow but I claim to be a lot of things but swaying minds for the benefit of all things bad or argumentative is an opinion of happy healthy minds.

Jackjosh profile image
Jackjosh in reply to Fattius

It is not about that it is about having positive to stay positive thinking so you don't go into a slumber feeling. That is why I don't go to the chats around where I live because I met a woman who told me it was the worst thing that happened to her so what you don't have to be negative there new people that have been diagnosed and it's hard for them to understand. That's what the chats are here for to meet people who are all alike in some type of way and come together not to talk crazy and make people feel worse than they already do

Fattius profile image
Fattius in reply to Jackjosh

There will always be those who scrutinize things out of place with ones morals or the way they view the world. Religious, atheists, doctors.....lol Before swallowing only the advice fed to u or any other there has to be a point where we can accept that our experiences shouldn't dictate the narrative of a reality, as m.s. will surely fill in the blanks, we are truly not all created m.s. equal! If an indictment is what is sought then I will always be guilty of offense to those who scrutinize things out of place with ones morals or the way they want their ideals towards others to be dictated. I enjoy being apart but am to damn stubborn to keep quiet and to inquisitive to not inquire. I write when I can and here on the wall when I can't.

RoyceNewton profile image
RoyceNewton in reply to Jackjosh

thank you

carolek572 profile image
carolek572CommunityAmbassador

Interesting post, Fattius We all eventually die, from whatever, take your pick. However, how does one measure your statement that 'ms' shortens lifespan by 5-7 years? Just asking.

Fattius profile image
Fattius in reply to carolek572

Making a point, that all experiences aren't as "fluffy" as they're condescending square minds can produce a scapegoat for ! My posts aren't ment to create waves only tiny ripples of inquisitive thoughts. My point is that take what I say with a grain of salt and add it to your shaker, if at the end of the day people find that I have cut to deep somehow then shake some into the laceration and see them for what they are " words"! I am also am not a doc but have a mind that can sift through the piles of shit ( research ) however limited it may be, to find worth if only for a few. Witty or not this disease is not cut and dry, as well as the conversations about it.

carolek572 profile image
carolek572CommunityAmbassador in reply to Fattius

Always interesting, you are, and you present another point of view. :-D

falalalala profile image
falalalala

I wonder how they came to that conclusion?

Fattius profile image
Fattius in reply to falalalala

If i had to guess, many cases can have disastrous effects on ones health and misinformation alot of the times lead to early departures.

ahrogers profile image
ahrogers

When I was first diagnosed I read that people with MS typically live into their 70s. Having no idea what my personal life expectancy would have been without MS not sure if it will change much. I am sure my mobility will be greatly impacted though which can cause other medical problems.

Could be worse

RoyceNewton profile image
RoyceNewton in reply to ahrogers

very good point. As you can tell I quite like my ms life now, the old one was kind of directionless. At least now I have an idea where to go

MarkUpnorth profile image
MarkUpnorth

Sorry, but I WILL Live Longer, whatever that may be, because I am now a 1000X healthier than I ever used to be! I EAT HEALTHY. I Push Myself To Exercise. I'm off all the chemicals in our food, and in our drugs. I may not be able to remember what I ate for my last meal, that I made, without a long and hard thought about it, maybe it's because I have to go pee again unexpectedly, or I'm still trying to remember where I left my post-it notes. BUT, I DO MORE physically, except for anything requiring balance, endurance.....than I ever did, or most of my neighbors EVER DO.

If you give up, and live like I did because of M.S. getting the better of me, essentially comatose for years....yep, I'd be dead in short time. Just don't give up. Do all you can do!

RoyceNewton profile image
RoyceNewton in reply to MarkUpnorth

good point, some live longer so I will aim for that as well

falalalala profile image
falalalala in reply to MarkUpnorth

You are inspiring to me MUN.

pamgarner profile image
pamgarner

we are all going to go sometime,if I pass from ms. please give me a party,I deserve something from this yucky disease:)

RoyceNewton profile image
RoyceNewton in reply to pamgarner

good attitude

Peruzzot profile image
Peruzzot in reply to pamgarner

When i finally kick the bucket I'm going to do it with scars, bumps, bruises, dents, dings, and some broken parts...I'm doing pretty good on the list already.😁

I've got a large collection of scars, a broken left ankle, a broken left arm...done about 6 years apart...A dent in my skull from a car accident when I was 6, been stepped on (was always accidental) and kicked by a horse (that was on purpose and I deserved it. I knew it then and know it now. I was about 9. He kicked me so hard in the chest that he didn't even leave a red mark but I got the message loud and clear...knock it off!) MS is just my latest adversary.

pamgarner profile image
pamgarner in reply to Peruzzot

what is the saying?"when I pass away,I don't want to arrive in heaven dressed sharp and clean I want to slide into home base bumped,bruised, and dirty like I lived an interesting life.I have had 2 broken arms in my life and a broken leg,I figure i only have 1 good limb left,and i am trying to take care of it!

You may also like...

Can you help solve this?

Why tracking your symptoms can make you feel worse

I'd love to get everybody's opinion on this. In my case, I certainly do better overall if I don't...

CAN YOU REMEMBER WHEN YOU WERE DIAGNOSED

was only 36 years old. Let me tell you that was a very very BAD year. It had been 14 years since...

How can you trust them?

someone when their future depends on how long you can remain sick?...

help me if you can please