MS Society-Org Lying to Us?

[journeyman]

Just to point out your ignorance.

Annetted did not die from MS. She died from COMPLICATIONS of MS. That means that she died from another cause SECONDARY to the MS. Just as people with AIDS do not die of AIDS. It is a disorder that disables the system to cope. They die of PNEUMONIA or CANCER. Or in simpler terms - People involved in head on collisions from drinking and driving do not die from that...they die from TRAUMA secondary to the other things.

I think that you just want some one to blame for you anger about having the disorder. No one is lying to you. You have MS, your are going through the stages of grief, "Anger." And you might die from some other secondary cause not MS. MS is only the set-up condition. This goes out to all of you who think they are lying to you. You apparently do not understand the medical field and legalities.
RRMS X 6 years. 2 years of Rebif. Ret. Clinical Psychiatric RN. And 12 year vetran of teaching Health Sciences.
Dave Tampa FL
"Journeyman"

[Jules A]

I think I'm one of those 50 or 60 something posters that's being criticized here. I'm actually in my 30s and newly diagnosed. I do respect everyone's right to express their subject positions here, and tried to make that clear in my initial posts. I was not attacking anyone, I was trying to carve a space for my own experience on this board and decrease my *rampant* fear to some degree.

I see now that the response to my attempt is to wish to stick a fork in my eye. I will not, under any circumstance, be back to this board.

OMG I didn't even read your post and was only trying to make a joke with another member. Sorry I didn't realize we weren't embracing a bit of dark humor in light of our bond with this miserable disease.

Trust me I don't wish to stick a fork in anyone's eye.

[kelm10]

courteous

Not eveyone is trained, nor experienced life in the same way. Respectful posting of ones knowledge is what should happen here.

I will openly say, I have not read all the posts in this thread. I can not concentrate that long.

It is not a lie per se. It is a complication of MS. So ulitimately it is the underlying cause, but the actual cause of death is what ever it is that they list. Such as pnemonia, dehydration, or what ever else that is the immediate cause of death.

[Jules A]

Annetted did not die from MS. She died from COMPLICATIONS of MS. That means that she died from another cause SECONDARY to the MS. Just as people with AIDS do not die of AIDS. It is a disorder that disables the system to cope. They die of PNEUMONIA or CANCER. Or in simpler terms - People involved in head on collisions from drinking and driving do not die from that...they die from TRAUMA secondary to the other things.

I think that you just want some one to blame for you anger about having the disorder. No one is lying to you. You have MS, your are going through the stages of grief, "Anger." And you might die from some other secondary cause not MS. MS is only the set-up condition. This goes out to all of you who think they are lying to you. You apparently do not understand the medical field and legalities.
RRMS X 6 years. 2 years of Rebif. Ret. Clinical Psychiatric RN. And 12 year vetran of teaching Health Sciences.
Dave Tampa FL
"Journeyman"

As someone who does understand the nuances and legalities of the medical field, although I'm not sure where the legalities play into this thread, I disagree with both your arrogance and assertion that some who have posted are simply bitter about their diagnosis.

[ms man]

Today's paper lists Annette Funicello's cause of death as "multiple sclerosis complixcatiions" I thought that wasn't possible.

[AMJ]

The EDSS scale states

10.0: Death due to MS

I think that by stating death is a result of complication from ms is the same as death due to MS.

[Tawanda]

I think I'm one of those 50 or 60 something posters that's being criticized here. I'm actually in my 30s and newly diagnosed. I do respect everyone's right to express their subject positions here, and tried to make that clear in my initial posts. I was not attacking anyone, I was trying to carve a space for my own experience on this board and decrease my *rampant* fear to some degree.

I see now that the response to my attempt is to wish to stick a fork in my eye. I will not, under any circumstance, be back to this board.

If everyone on this site thought about M.S. the exact same way I did, this site would be useless to me. It's the diversity that attracts/helps me. Sorry it didn't do the same for you.

[MrsBones]

Today's paper lists Annette Funicello's cause of death as "multiple sclerosis complixcatiions" I thought that wasn't possible.

It's possible, though rare, to die directly from MS with something like a lesion that affects the ANS. It's also possible to die of complications of MS, like pneumonia, UTIs or even pressure sores that go untreated or treatment related complications like PML. Not to mention suicide which may or may not be related to MS induced depression (either biologically or situationally).

The cause of death can be MS or complications thereof. What is put on the death certificate is just semantics. For the purposes of this thread, I don't see the NMSS as lying to anyone. They do say on their site that death directly caused by MS happens, but is rare, and that complications can be dangerous.

Hpwever, many of those complications can be either prevented or mitigated if one is aware of their possibilities and takes action. For example, my neuro has me take a urine test evey month because I don't feel any symptoms of an UTI until it becomes a kidney infection. By checking regularly, I can head off an infection before it becomes dangerous.

[alishape]

Yes, I think they're lying too

I mean, what would the NMSS site look like if it just read "MS, Killing You Slowly". People would get depressed and jump off a bridge. I know for a fact when I have a flare, my heart arrythmia is more frequent, and that that arrythmia started when my symptoms started. So if I stroke out or something during a flare, my death certificate will say that I died from a stroke. The thing obout this disease that makes me the angriest is that the brain isn't mapped (not that I am trying to start a political discussion here, lol), so any plaques on the MRI could mean anything. Well, not anything, but no one knows for cetrtain and each individual course of disease progression is so unique. We have spots in our brains! I would imagine that one well placed spot could kill anyone.

On a side note, I don't think this is a particularly negative thread, but sometimes coming to this site puts me in a bad place. Not because of the threads or the people - who are mostly wonderful - but because I can get into a funk on my own. Also I think MS does kill connections. That what most people here post about. I was reading today about a person who was stuck on the second floor of her home and couldn't down out unless someone carried her down the steps. Most of us are the more concerned about our missed connections than we are afraid of dying.

[lusciousleaves]

FWIW, my grandfather had his cause of death listed as "complications from MS." We knew some time in advance (a day or two?) because his breathing became irregular, and we were all called in to say our goodbyes.

[Thinkimjob]

If the person who died hadn't had MS, then they wouldn't have died from MS complications, because presumably they'd still be alive. So, um, they did sort of die from MS, didn't they.

The first thing my first neuro told me 15 years ago was, "MS is not a fatal disease."
"What about the parts of your brain which control breathing and your heartbeat?" I asked. "What happens if you get a lesion in there?"
"That hardly ever happens," she said.

I do think it's partly about not scaring the horses.

I knew three people with MS, who have since died. Two died in hospital from "MS complications", (pneumonia, organ failure, etc) and one from an overdose, (another MS complication, perhaps?).

MS takes a long time to run its course, and lots of other stuff plays its part along the way.

[onlyairfare]

Maybe I am old-fashioned but my mother taught me it is rude to call other people names, such as "ignorant."

There are some semantics involved here. Some people with MS die from pneumonia related to immobility and inability to breathe well and cough up secretions, thus allowing the infection to progress and cause death. "But for" the MS, the pneumonia likely would not have been fatal (or perhaps the person would not have had pneumonia at all). To-may-to, to-mah-to. I see no reason to belittle a fellow poster who has a different opinion about "cause of death."

Even if the cause of death is listed as "complications of MS" instead of "pneumonia" that is a step forward in recognizing how serious the disease can be.

[Thinkimjob]

Ah, don't get funky, alishape. Knowing other people were feeling as ****** (don't know how many expletives deleted I need there) as me was the ONLY thing that kept me going a year or two ago when everything started really going south.

It's obviously tricky - should a support group be relentlessly positive, or depressingly negative?

I don't know. I scroll over the stuff I disagree with, hey ho, whatever floats your boat etc.

[kellygrn]

Remember, NMSS is a fund raising organization. It puts out info to collect $$$ & so far, ignoring the worst of us has helped. New meds have been made "that may slow down the course of MS".

Until this year there was no mention on NMSS about end stage MS. Now there is a little.

Sorry to say with my 53 years of MS, I have had to go to other disease sites to learn about what is going own in my own body.

So take each day you are given & make the best of it. Figure out for yourself what will make today great. I have invented a new stylus for my spastic hand to type with. Makes my day good!

KK

[Tawanda]

So take each day you are given & make the best of it. Figure out for yourself what will make today great.

KK

I love this advice (although "great" might be a pretty tall order for me, personally, but I can still aim for pretty darn good!)! Thank you for putting a positive spin on my afternoon!