Survival and mortality in MS--60-year study of 1388 MS patients

[agate]

A large 60-year study of 1388 MS patients, done in Norway, ended in 2012. The abstract of the paper on this study, entitled "Survival and mortality in multiple sclerosis: A 60-year longitudinal population study," appeared in PubMed, April 4, 2017:

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Maybe surprisingly, in spite of the disease-modifying drugs, the life expectancy remained static, still about 7 years shorter than for the general population. However, the results are interpreted optimistically in an article in MedPage Today (April 11):

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[Howie]

I didn't see this answered, but how do you die from MS? Respiratory failure, or heart?

[Sunshine]

Or secondary problems? Such as wound infections, heart problems due to inactivity and over eating, shorter life due to social isolation, to name a few?

[stillstANNding]

From the MS UK web site:

Do people die from MS?

People don’t die directly from MS, but if they are severely affected, the risk of dying from a complication related to MS (like an infection) is larger. Research suggests that on average life expectancy of people with MS is slightly lower than that of the general population.
MS is different for everyone, and unfortunately it’s not possible to predict how you will be affected over time. It’s as difficult to determine the life expectancy of someone with MS as it is for someone who doesn’t have MS. Some research shows survival has been improving in recent years. This is partly because medical care is getting better but also people are living longer thanks to DMTs (disease modifying therapies).

ANN

[agate]

BBS and Howie, whether MS is the leading cause of death may depend on who is doing the autopsy or signing the death certificate.

You can get to the point where you can't eat any more due to gastroparesis. Breathing can become impossible, and pneumonia can set in and be fatal. In cases like that you may be listed as dying from pneumonia or as dying from MS. Often there are several causes of death listed, but the first on the list is the leading or primary cause even though the second one might be just as important in the opinion of many. It comes down to an opinion.

If someone develops pneumonia but is so weakened by MS and frequent earlier infections that recovery doesn't happen, what has that person died of? Hard to say sometimes, or at least that's my guess.

Years ago it was often said that people don't die of MS--but die of complications of MS. According to this study, though, MS is listed as the leading cause of death more than 50% of the time.

in more than half of cases, MS was the leading cause of death,

(from the article in MedPage Today)

[Virginia]

I have known several people with MS who have died. One was a man who was the first person I contacted who had MS. He was a minister who was facilitator of a live MS group. I joined the group and it went strong for a number of years. He was in a wheel chair and his MS was worsening, so he had to give up the group and it just kind of went downhill and went away after a couple of years. He was 64 when he died. I don't know what his death was actually due to, but I saw him at the Dentist office shortly before he died and he really looked bad. He always had very bad fatigue, no let up.

My former Dentist had MS and was in a wheelchair and died. He was 78. He played the saxophone really great, but his wife said the last time he played he told her he couldn't do it anymore, that he did not have enough wind left.

I read in the paper about a guy who was a member of the MS group I went to. He was on a scooter, which he stayed on during the meetings. Occasionally, during the meetings he would stand long enough to bend from the waist and rub his back around the kidney area. He was in his 50s, very good looking and extremely smart. He died in a nursing home on dialysis after the group broke up.

Another man in the group was in his early 70s and he went into independent living. It was hard to hear him because his voice had been affected to the point that he could not talk loud enough. He said he wrote poetry because the people in independent living mostly could not hear well, so he had no one to talk to. I saw a write up later about him in the paper and one of the poems he had written. Then I read of his death which according to the paper was attributed to pneumonia.

It just dawned on me that none of these people were on DMDs. That did not contribute to their deaths, but it just kind of hit me.

[stillstANNding]

I was just thinking about Jtwin. She died of PML, not MS. She had many symptoms but was still walking. She had given up driving. Her world was getting smaller.

ANN

[jendie]

My maternal grandfather had MS and died at age 45, in 1968. A year before I was born, so I never met him. I don't know what he died from, complications I'm guessing. My maternal grandmother only told me that he had MS after I told her I had MS. They divorced in the early 50s and she remarried in 1951.

[jendie]

I know of someone else who had MS and died. She had some kind of surgery, not related to MS, and contracted an opportunistic infection and that ended up killing her.

[Sunshine]

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[agate]

Thanks for the link, BBS. It seems that there have been 22 cases of listeriosis associated with Lemtrada in MS patients, and 3 of the cases were fatal.

And it's connected to certain kinds of food that you need to avoid for several weeks before the infusion. Not so easy considering that the foods are really common--deli meats, hot dogs, soft cheeses, celery, sprouts, ice cream.

[Howie]

The only food on that list I ever eat is ice cream. But I'm not ready to try that drug, or any. Thanks for the info.

[Virginia]

Do any of you remember a lady who was on here who died of complications of giving Copaxone. The site reactions were really bad for her and she kept giving them because the Nurse told her to. She told her to put hot cloths on the sites after the injection. She would come on and state that she was doing everything the Nurse told her to do and was not getting any better. I couldn't figure out why she didn't stop the drug, but later she died and a friend of hers came on long enough to say that she really had tried, but that she died from necrosis of the skin.

I remember that - it has been a long time.

I also remember another man from my live support group telling me that he had an Uncle who had MS and died from an undetected bladder infection.

[agate]

You might mean Rita Slater? I think she was rslater here. I was in touch with her by e-mail after she left this board. I believe she left mainly because she was too ill.

The neighbor who lived across the hall from me for about 17 years whom I've mentioned before died a few years ago. The unofficial account was that his kidneys failed. I don't know what the official cause of death was for anyone I know with MS who died--there have been about 10 people I've either known personally or by snail-mail correspondence/phone contact. I've lost track of 4 of them but I'm fairly sure one has died and quite possibly the other 3 as well.

These are people who weren't on this board. I knew them before I knew about the Internet. That would have been before the disease-modifying MS drugs too.

[Sunshine]

I remember rslater. I didn't know this happened to her, or perhaps I knew it back then and then the memory faded. In any case, it illustrates how many things can go wrong with medical care.

With MS, many of us, myself included, have many encounters with docs, nurses, CNAs, med assistants,hospitals, doc receptionists., pharmacies, nursing homes, etc. ...Any of these can become the weak link in getting good care.

Maybe it is no accident that my typing in pharmacies autocorrected to harmicides.

Harmacides, a new word to refer to death from incompetent medical care.