Question??: do we know of anyone... - My MSAA Community

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Question??

pamgarner profile image

do we know of anyone personally,that actually passed away from ms? I know we get just regular many other diseases and many people pass from those.When I ask my neuro about it,he said yes if you become completely paralized, you can't breathe or swallow.and stats say ms patients live 7 year less that the norm. what are you hearing or reading?

76 Replies

I only know of one, and that was back in the early 70's, long before any forms of treatment were available and also back when medical care wasn't all that great anyway.

pamgarner profile image
pamgarner in reply to NorasMom

that is wonderful we ms sufferers have to go that far back timewise before meds,good news

i'm thinking of famous people, like annette funicello and richard pryor. his was technically heart attack, but if you see footage, it was ms related. like my dad technically died from heart attack brought on by aspiration pneumonia, but he wouldn't have had that without parkinson's, so parkinson's killed him.

i'm kind of freaked. i have a spasm in my torso that stops my breathing. most of the time it's in the back of my mind, but on really bad days i can go 10 seconds with no breath.

I didn't mean to be totally depressing,you just don't hear about anyone passing from ms. just wondering

I think that’s more the case, as you said, BlanketTime1 … you die of “complications of MS” but not directly of the MS itself. I’m sure it’s listed secondarily on the death certificate as a contributing factor. I don’t mind talking about these supposedly morbid topics at all, since discussing it so openly helps me feel less frightened and anxious. 😌

I think being freaked about your airway closing up on you is completely understandable. I had that symptom for a short time about 5 years ago and I remember the sheer panic. Like, if this muscle doesn’t let go, I’m going to die. And you have no control over that muscle and you truly don’t know in that moment whether it will ever decide to unclamp itself. And you realize your whole existence depends on some stupid misfiring electrical signals — and it’s just not fair.

LissaH profile image
LissaH in reply to HensTooth

I totally agree with you HensTooth.

pamgarner profile image
pamgarner in reply to HensTooth

got that 100% right!

@BlanketTime1 Sounds like you have been experiencing MS hug. When I first had it and read about it I didn't care for the name as it isn't comforting like a hug. It does squeeze like one though, which is how it got its name.

pamgarner when I was diagnosed in 2014 I read a lot and at that time pwMS lived close to a normal lifespan, typically living into their 70s. So 7 years less than average sounds about right.

However, maybe with newer DMTs controlling the disease better it will turn into too close to calculate the difference. With less diseas activity there should be less disability which should mean less complications from MS.

Maybe they will even find a way to remyelinate so future MSers won't have disabilities!

wolfmom21fl profile image
wolfmom21fl in reply to ahrogers

I had MS hug so bad long before I was ever DX'd that they sent me to the hospital for CT scans of my lungs to make sure i didnt have clots in my lungs and then told me I had pleurisy. The couple of times it was that bad I could barely breathe and thought I was dying and then it just went away.. I woke up one morning after like 3 days of exrutiating pain and it was gone.. my rib cage muscles were sore for another week but that was it.,. Its happened like that a few other times but now that I know what it is I put the TENS units on the rib cage muscles and turn it on for ten minutes at a time until those muscles let loose

so glad you found the solution!

pamgarner profile image
pamgarner in reply to ahrogers

wouldn't that be wonderful?

LissaH profile image
LissaH in reply to BlanketTime1

wow that has to be scary. I pray things get better for you. I sometimes have a hard time swallowing and it kind of cuts my breathing. I start to freak out a little because I'm trying to gasp for air. and tell myself to re swallow slowly and then I can breathe again.😞

BlanketTime1 profile image
BlanketTime1 in reply to LissaH

HensTooth 'complications,' that annoys me. i wish they would come out and say it. ahrogers i also experience the so-called ms hug. whoever thought up that name?? this is something different. it's a spasm that jerks my neck back, stops my breath and can extend down my arms and into my hands, which go into claws. it feels like it's something coming through my chest wall. though when the symptom developed, nothing new showed on my mri, my neuro was convinced it was in my cervical spine and just not showing. oddly, it was one of my first symptoms, though back then it was a slight tilt back of the neck with trouble breathing for a second. ah, progression...

wolfmom21fl breath interference is terrifying, perhaps that's why doctors don't discuss it much. my neuro didn't believe how bad it was until it happened during my consultation. now after it's over and i can breathe again i often get 'stuck' and have to shrug (something i learned about here!) to trick my neck muscles into letting go.

LissaH profile image
LissaH in reply to BlanketTime1

wow thats crazy, I'm so happy you found something that works for you. As if we didn't have enough to deal with. 🙄 I'm just so thankful for this site, I can't imagine having MS and not having people understand what your talking about and.be able to talking about it openly, giving opinions, encouragement, laugh, cries, love, likes, help, fun, blessings, hope, prayers, and all the above good stuff that we need in our life.

LissaH profile image
LissaH in reply to LissaH

🥰

pamgarner profile image
pamgarner in reply to LissaH

it's great huh???

wow, how bad for you! i learn something new here daily

i was just telling my shrink that i used to go suicidal whenever i got a new symptom (then angry, then depressed... and find my way back eventually), but since finding this site i get upset, but i come right here. it helps. 🤗everyone!

you betcha😛

OMG! Blanket! I am sitting here reading this and I sat up straight and shrugged hard and could feel all the rib muscles engage! Holy moly! I will try this first the next time I have an MS hug to see if this helps first! I never heard this before and never thought of it... TY so much!

thank you for tip

i think i read it on the dystonia hub, but i'm not sure who posted it. i was scrolling through and someone mentioned how to trick our muscles into relaxing. it kind of reminds me of when i get stuck walking. if i can manage to jerk one foot out to the side, i come unstuck. the brain is a strange animal.

I feel as though something is found to say the cautof death. But did having ms lead to having the ailment/issue/disease.

pamgarner profile image
pamgarner in reply to MrsBigW

makes me truly wonder!

My MS doctor says people don't die directly from MS. People die from complications due to or made possible by an MS condition.

Like my mom had terminal cancer. But it was a complication from a UTI that actually caused the death. Without the cancer, would she have ever got the UTI? Probably not....

pamgarner profile image
pamgarner in reply to palomino27

so sorry about your mom,but thanks for responding

The Cause of Death is never a complete picture. Like others have said, it's why the person died at that particular moment, but it's not necessarily an accurate portrayal of what was happening in their life.

As an amateur genealogist, I've seen this a lot on old death certificates. "Cause of death: skull fracture. Contributing cause: hit by train." "Cause of death: fever." Further research shows that it was a complication of childbirth.

I honestly wouldn't worry about a shortened lifespan due to MS. I'm more concerned about my family history. Half lived into their 90's and half died before 63. Which am I going to take after?

mrsmike9 profile image
mrsmike9 in reply to NorasMom

My mom's history was when people turned 70 they developed Parkinsons. She was scared to death. She passed in 2020 at the age of 98. Her body just wore out. She was healthier than I've ever been! So you MAY have relatives that had various issues but that doesn't mean you will develop them.

pamgarner profile image
pamgarner in reply to mrsmike9

that's right cutie:)

green244 profile image
green244 in reply to NorasMom

Yes, my father’s death certificate read like this: cause of death heart stoppage, due to dehydration, due to Alzheimer’s, due to car accident 10 years prior. Yes, there is such a thing as accident-induced Alzheimer’s. At the very least the TBI causes brain degradation which can cause the effects of Alzheimer’s to be worse sooner. Also, the dehydration comes when the brain no longer recognizes thirst.

pamgarner profile image
pamgarner in reply to NorasMom

90😃

Yes, I've had two good friends that died from MS and two more that have been bed bound for decades.

green244 profile image
green244 in reply to Buttermom

Who is taking care of your bed bound friends? We don’t all have the resources of Annette Funicello.

right? that's what scares me. even with the money (she says as if that's possible), i'd worry about being a veg. *sigh

it is the unknown that worries me

Buttermom profile image
Buttermom in reply to green244

They are in long term care facilities.

green244 profile image
green244 in reply to Buttermom

Somebody has to pay for this. Either Medicaid or private pay. Medicare doesn’t cover it

Buttermom profile image
Buttermom in reply to green244

I know one (probably both) was on Medicaid.

pamgarner profile image
pamgarner in reply to green244

i think medicare is the big plan to get rid of the sr. population,it is supposed to be so helpful

green244 profile image
green244 in reply to pamgarner

My husband has been happy with it. Of course, you need the supplemental to make it equivalent to employer group plans.

wolfmom21fl profile image
wolfmom21fl in reply to green244

I have Medicare Primary and State Medicaid secondary because my Soc Sec payment is so low. What Medicare does not pay, Medicaid supposedly picks up. Maybe. Or not. In any case, doctors who see me cannot charge me anything above what Medicare pays because of the program I am in called QMB (Qualified Medicare Beneficiary) So if they accept me as a patient under this then they have to accept whatever Medicare pays them and cannot charge me more than that. Eventually Medicaid may pay a small amount of the remaining 20% but it will take a lot longer than Medicare for them to pay it. This applies to all of my Part A and Part B expenses. Part D is subject to co pays until I reach my stage 2 cap and then I am thrust into stage 4 because I get "Extra Help" from Soc Sec which covers part of my premium for Part D and any excess of copays above the $3.95 or 9.85. and I skip over the Gap stage that normally applies to Part D coverages. Anyone who is on Medicare that doesn't get more than a certain amount of Soc Sec Benefits needs to check into these programs. It saves you a ton of money.

green244 profile image
green244 in reply to wolfmom21fl

Well, hopefully Medicaid will cover you. Medicare does not pay for more than 100 days of nursing home care.

pamgarner profile image
pamgarner in reply to green244

gheezzz!

green244 profile image
green244 in reply to pamgarner

Yeah - that’s why so many of my friends bought long term care insurance, but stupidly, we decided to self insure because most people only need 3 years in a nursing home which we felt we could cover. 10 or 20 years is another matter entirely. One friend divorced her husband in order to preserve half their savings. When his runs out, he’s on Medicaid.

green244 profile image
green244 in reply to green244

I was just talking to one friend yesterday and when they were 60, they spent $300k over 3 years to buy a policy that covers them both for the rest of their lives and has a death benefit if they die before needing it. (Yes, I have rich friends. ) But, they feel more comfortable not being a burden to their children or each other.

pamgarner profile image
pamgarner in reply to green244

my daughter once told me, be kind to your daughter she is the one who will choose your nursing home!!!😍

great info

pamgarner profile image
pamgarner in reply to Buttermom

thanks that is what i wanted to know

I don't know of anyone who has.

MS is not a fatal disease. BUT, it can cause something that will kill you. Like breathing problems, or lack of mobility leading to digestive or heart problems.

pamgarner profile image
pamgarner in reply to tompumo

what a mean wicked disease!

I do not personally know of anyone who died of MS. My doctor once told me “you don’t die from MS, you die with it.”

pamgarner profile image
pamgarner in reply to Bwine

good way to put that!

I have known 3 who have passed from Parkinson's (I know different vector), their cause of death was labeled as sepsis or pneumonia. The contributing cause was Parkinson's.

pamgarner profile image
pamgarner in reply to jorrell

that is confusing!

jorrell profile image
jorrell in reply to pamgarner

To clarify, it was info on how coroner's ID the cause of death, no matter what the disease is.

My Brother keeps telling me he has a friend who's mother has MS and she is now 98 . Wow !!

pamgarner profile image
pamgarner in reply to Elle61

God love her! i don't know about 98 feeling the way I feel

Elle61 profile image
Elle61 in reply to pamgarner

I know what you mean , I've been dealing with his for 43 years now , no way I want to go to 98 .

Yes. My cousin Jo. Had MS for over 30 years. Was diagnosed in the late 70’s. Was bound to a wheelchair for over 10.

pamgarner profile image
pamgarner in reply to SandraKOE

so sorry😞😞

My wife is now 803

My wife is now 80 and has MS and still going strong. The SS actuarial tables for the year she aWas born said 77.4

thank you

I only know of one famous person Jaqueline du Prè who died of 'lethal MS.' It is EXTREMELY rare. And that was in the 1960s, long before the treatments we have now.

pamgarner profile image
pamgarner in reply to ekelks

thank you replying

I don't know anyone personally. The life expectancy for women with MS use to be 68 years, but I think the newer treatments and trend to start treatments earlier will change this. I've cared for someone who was critically ill in a relapse, half paralyzed on a ventilator, and younger than myself at the time.

Yes, I know 5 that have died due to complications of MS. Three were at assisted living facilities at time of death. Two died at home. Also know of two more that are bed ridden in assisted facilities. This has been over 27 year period. Stay positive 👍🏼🙏

pamgarner profile image
pamgarner in reply to Kenu

i am.... not much else you can do

My sister who had MS died in 2015 age 54 with pneumonia. It was a very traumatic experience for the both of us. I was with her when she passed and it was at least to say brutal on her. I say she died because of MS. If she didn't have MS she would have had the strength in her lungs to breathe on her own. When you're unable to feed yourself anymore or get up and move you are susceptible to all kinds of things. So yes I say MS killed her.

pamgarner profile image
pamgarner in reply to Humbrd

awe,so sorry,what an experience. sorry about your sis

pamgarner profile image
pamgarner in reply to Humbrd

thanks for your honesty

wolfmom21fl profile image
wolfmom21fl in reply to Humbrd

So very sorry for your loss

Humbrd profile image
Humbrd in reply to wolfmom21fl

Thank you

I watched a documentary on Annette Funicello's battle with MS. It stated that she "Died due to complications from M/S". However, that was several years ago (back in the '80's).

thanks for the reminder,i forgot

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