Did I miss something in MS 101???
 

Every source I have read has stated that MS is NOT considered a fatal disease in and of itself. The NMSS states that it is not fatal except in rare cases. People with MS pretty much have the same life expectancy as everyone else.

Recently someone made a comment that his friend had to retire because (paraphrased) his doctor told him that if he didn't retire, the stress would soon cause him to die of MS.

I'm trying to decide if somebody was exaggerating, if somebody misinterpreted something, or if the person in question is one of those "rare cases"? Surely there's a piece of the puzzle missing.

I guess my concern is that misinformation is getting passed along that could lead people to believe that MS is a fatal disease.

Sure, MS could cause me to lose my balance and bonk my head, or I could develop other conditions due to inactivity, etc. But I've always reassured my family that MS is not fatal, and I'll be around to harrass them for a long time.

I would call this, at the very least, misinformation and/or a Doctor who is not familiar with MS.

If stress caused a person with MS to die I should have been gone a long time ago :rolleyes:

MS can be fataL, the MS community have lost their fair share through the years. However, unless you kow the exact circumstances there is no way to know if it was a direct result of MS, a complication of MS or if the person had another health problem that contributed to their death.

I didn't think MS could be a direct cause. I thought complications from MS could lead to death. For example optic Neuritis might cause you to have problems with your sight that might cause you to have a fatal accident. The optic Neuritis might be caused by MS therefore attributed to MS but death not directly caused by MS, at least I think.

Maybe that doctor will die of stress or just deserve to.

My guess is the doctor did not say this at all. The patient interpreted something the doc said and exaggerated the statement. Stress is bad for M.S. and therefore the patient passed along this information as a much worse scenario.

I remember reading one that the actual life expectancy for someone with MS is approximately 7 years less than your estimated life expectancy. I can not remember where I read that now.

I think he probably meant that repeated relapses from stress could cause things that lead to death. If someone responds to stress with bad relapses it causes loss of brain and spine matter eventually and as a result you could die if it affected your breathing or other important body functions.

MS can affect life sustaining functions such as breathing and swallowing :(

The years I have been on MS forums I have read about many deaths of those with MS. Some of those deaths have been in their very early 20s. It is so heartbreaking when a mother posts the death of her child or a mother googles her son's username and finds the threads/post he has written and lets members know he has passed on.

Death due to complications, a direct result of the disease, suicide or due to some other unrelated health issue --- Life with this disease is not easy.

Malignant MS
 

There is a form of MS called "Malignant Multiple Sclerosis" that is fatal.

I have also read about a form of MS that has unusual brain lesions that have rings around them that are characteristic of a severe form of MS.

http://www.msinfowiki.ca/index.php?title=Malignant_MS

jackD

My strength for breathing in is 60% of normal and breathing out is 16% of normal. I tend to choke when trying to swallow, which I've gotten used to and usually try to avoid eating in public because of it.

But Saturday night at the awards banquet I had one that scared me pretty bad. I tried to swallow a bite and it got stuck in my throat, I tried several times to swallow and was about ten seconds from letting my husband know what was going on. I was trying to keep calm and see if I could get it to go down on my own though, I did it yay!:D

I guess if I couldn't I was in the perfect place for it though. I had my DH who is an EMT, next to him was another, around the room were several more, a paramedic was there and in the parking lot was the rescue rig with their medical equipment ;) I know it's not funny, but if I don't laugh at my issues I would cry.

I tell my family it's not fatal, I don't want them to worry. My hubby understands the breathing and swallowing issues though.

Stress does NOT cause MS BUT it can cause an increase in exacerbations in multiple sclerosis folks.

jackD

BMJ. 2003 Sep 20;327(7416):646.

Self reported stressful life events and exacerbations in multiple sclerosis: prospective study.

Buljevac D, Hop WC, Reedeker W, Janssens AC, van der Meché FG, van Doorn PA, Hintzen RQ.
SourceDepartment of Neurology, Erasmus MC, Postbox 2040, 3000 CA Rotterdam, Netherlands.

Abstract
OBJECTIVE: To study the relation between self reported stressful life events not related to multiple sclerosis and the occurrence of exacerbations in relapsing-remitting multiple sclerosis.

DESIGN: Longitudinal, prospective cohort study.

SETTING: Outpatient clinic of department of neurology in the Netherlands.

PARTICIPANTS: Patients aged 18-55 with relapsing-remitting multiple sclerosis, who could walk with a cane or better (score of 0-6.0 on the expanded disability status scale), and had had at least two exacerbations in 24 months before inclusion in the study. Patients with other serious conditions were excluded.

MAIN OUTCOME MEASURE: The risk of increased disease activity as measured by the occurrence of exacerbations after weeks with stressful events.

RESULTS: Seventy out of 73 included patients (96%) reported at least one stressful event. In total, 457 stressful life events were reported that were not related to multiple sclerosis. Average follow up time was 1.4 years. Throughout the study, 134 exacerbations occurred in 56 patients and 136 infections occurred in 57 patients. Cox regression analysis with time dependent variables showed that stress was associated with a doubling of the exacerbation rate (relative risk 2.2, 95% confidence interval 1.2 to 4.0, P = 0.014) during the subsequent four weeks. Infections were associated with a threefold increase in the risk of exacerbation, but this effect was found to be independent of experienced stress.

CONCLUSION: Stressful events were associated with increased exacerbations in relapsing-remitting multiple sclerosis. This association was independent of the triggering effect of infections on exacerbations of multiple sclerosis.

Comment in
BMJ. 2004 Jan 31;328(7434):287; author reply 287.
PMID:14500435[PubMed - indexed for MEDLINE] PMCID: PMC196389

I've read about something called the "Marburg variant" of MS that apparently works it's way quickly thru a person, but it's supposed to be extremely rare.

I wondered if Richard Pryor was one of those that was unlucky to have the Marburg variant, since it seemed like he went downhill fairly quickly after he announced his MS (or I'm just thinking it went quickly for him because he didnt do much entertainment-wise fairly soon after he announced it)

Richard Pryor was one of my most favorite actor/comedians when I was growing up. (yes, my parents let me and my sister listen to some of his more...risque comedy concerts when we were little) Loved all his movies that he did with Gene Wilder...I wish I didnt have MS in common with him tho...I wish that he hadnt had it either now that I know what it's like. (I wish no one had MS. It would be nice if "MS" only stood for "Microsoft")

I think Richard Pryor kept it to himself for a while. He was diagnosed while he was on drugs and he said that being diagnosed with MS helped him kick his terrible habit. This was part of his routine. Setting himself on fire didn't stop the drug abuse but he said that MS did. I can't recall which routine it came from but I'm sure he said it.

Life itself is a fatal disease and MS is not exactly a perk, so in some way I'm sure it helps our fatality along. That would be in different degrees, depending how serious our MS disease is.

It's not like heart disease, where a heart attack can take you at any moment or a bad cancer, that is eating away at your organs. But, with MS, our immune systems are somewhat comprimised, so Infections can happen and the serious ones can lead to death.

But folks, we all gotta die of something, don't we?:D:p:D

My insurance agent has told me that I would not be able to get a new life insurance policy due to the increased liklihood that MS will shorten my life. It is known to cause complications as the disease progresses and our bodies don't work as well as they should, such as our kidneys. But I refuse to believe that MS is a fatal disease.

I'm not sure why it is such a big deal as to whether MS is technically fatal or not. :confused:

I am far more concerned with having my life and dignity stolen from me while I continue to exist in a vegetative state than from actually croaking from MS.

Although imvho MS absolutely can be fatal in the ways already mentioned such as the aggressive versions, brain stem lesions, infections from immobility and pneumonia from being bedridden. :(

I think we are more likely to die from cancer or heart disease.

I'm surely more likely to die of a heart attack or be hit by a logging truck as I'm trying to cross the road!

I guess I'm bothered that people (friends, family, newly diagnosed, general public) will get the idea that MS is a 100% death sentence.

Of course, on the other hand, I'm always bothered when people get the idea that it's "just" MS, nothing really serious.

*sigh*

My understanding is that while MS isn't usually fatal, that a higher level of disability can cause the body to be more susceptible to succumbing to potentially fatal health problems like pneumonia, heart failure and so on.

I get it when people like Blessings2You post that "I'm always bothered when people get the idea that it's "just" MS, nothing really serious" though. I know my family have become so used to me that when I say 'I am really having a bad day....' or 'my MS is wiping me out - or causing pain in my legs - or making me dizzy - or making it hard to breathe....' it's becoming like 'ho hum....here she goes again...'

Lyn

Oh gosh, Lyn, I hear ya...I get so sick of people saying, "Oh, I know, my legs hurt...I get dizzy...blah blah..."

No one except an MS patient can really understand what we experience. I've had fibromyalgia for over 2 decades, and it doesn't compare...MS is so much worse.
I'm getting to the point of just saying "I'm fine" when people ask. They just seem to want to tell me that they understand because they have similar health issues...NOT!!:mad:

Almost fatal for me
 

They say it's not fatal, but that's not entirely true.

I very nearly died of a brainstem lesion at the age of 30. I'm in my forties now.

It happened very suddenly, and put me in the Critical Care Unit (worse than ICU) in the hospital.

My heart rate and blood pressure were extremely low, HR 25 bpm, my heart could have stopped at any time because of this lesion.

Luckily, I did eventually recover from that, but it was a long road. They said my youth helped me and I believe that.

Not trying to scare anybody, but people deserve to know the truth IMO.

Like somebody else mentioned, I'm more concerned with quality of life rather than shortened life when it comes to this disease; but yes it can kill you.

I agree and thank you for sharing your experience.

Imvho there is far too much secrecy and denial within the MS community and I wonder if that hasn’t in part contributed to the lack of progress we have seen in MS research.

I know this might not be a popular comparison but to me it smacks of when HIV was first identified and basically ignored for years. When I think of how many people who died unnecessarily from what is now a treatable disease it breaks my heart.

EDSS 10 = death from MS

Yes, it is possible. About 95% of us will not die from MS though.