MS Society-Org Lying to Us?

[fourcats]

It has been a while but the cause of death on death certificates had to change so as to list the underlying cause of death and not the immediate health problem that ended the person's life. For example--a person with brain cancer is dying from that but because of the chemo treatments and reduced immunity, develops pneumonia and dies from pneumonia. At one time, pneumonia was listed as the cause of death and now brain cancer must be the primary reason. Officals wanted the true cause of death to be accurate. Well, the MS Society, et al, keep saying that MS does not kill. As far as I am concerned that is a lie, a bold faced lie. Yes, people do die from MS. If they don't then I need to let two dead people know that they are not supposed to be dead. I fully understand that the MS has to generally be quite agressive for one's condition to lead to death, but none-the-less- Ms DOES cause death. Perhaps if the truth were told more people would be alarmed enough to donate for more research. Every person I have met has thought MS was just something that caused a person to walk funny but that was it. They did not see MS as serious or that they should be concerned about. If people actually knew that MS could be fatal maybe that would spurn them on to help with the cure or at the very least, understand MS--- and those of us with it,-- a little better.

[Jules A]

I didn't think the MS society was touting that ridiculous sentiment and agree with you that it is important for people know just how horrific MS can be.

That whole "you can't die from it" baloney doesn't comfort me one bit because imo dying will be a blessing, for me, if mine progresses like I have seen in others.

Sadly many of 'our own' are the ones supporting the candy coating regarding the likelihood of progression as well as glossing over the familial component.

I get that it is out of fear and denial and I didn't envision my future as it is likely to be but have spent the past 8 years trying to plan for and come to terms with the reality of it.

[Tawanda]

My mom died from M.S., but death certificate gave it second billing to pneumonia! Funny, though, if you try applying for life insurance and you have M.S., all I can say is good luck with all that!

I don't know how old you guys are, but it took almost a century before the cigarette/death link was finally revealed to mainstream America. M.S./death link may take even longer because unlike smoking, there ain't a thing you can do to prevent it! There isn't the same sense of urgency for the public welfare.

My hope, as a second generation MSer, is that we can start a dialog about the hereditary component of Multiple Sclerosis. I have 3 first cousins on the same side of the family also suffering from M.S. I doubt this is pure coincidence - I know of too many other familial cases of M.S.

[onlyairfare]

In most cases it is the attending physician who lists the cause of death, not state officials. So if it is important to you, you could discuss it with your physician and put your wishes in your living will. I guess that is the silver lining to a slowly degenerative disease, huh?

I think that the MS advocacy organizations use some "fudge language" along the lines of "not usually fatal," but I don't think anyone is really fooled into thinking MS is not a serious illness. I'm not into disclosure so I rarely discuss my health with others, but as far as I can see, most of the general public has never even heard of MS, let alone given any thought to whether or not it causes death.

[Thinkimjob]

There has recently been an enormous scandal in the UK called Mid Staffs. Lots of people were dying from pneumonia and infection, due to the poor standard of care.

what to do, what to do.. so some doctors/ nurses/ bureaucrats just changed the reason why people were in hospital in the first place from heart attack, cancer etc to needing palliative care if the patients were over 65.
Pneumonia? Perfectly normal. Problem solved. Not.

I for one want it written down as MS when I die. If it's good enough to claim smoking even one cigarette meant smoking caused or contributed to your death, then I think 40 (I hope not) years of MS might have played some part.

[rdmc]

There is more research being done into SUDMUS...which acknowledges sudden death due to MS. They attribute it to autonomic problems caused by MS...cardiac or respiratory. The researchers believe it might be under reported. If there research confirms the incidence , then those deaths will certainly be attributed to MS.

[gloobylube]

Well as one, near finally being dx with MS after 9 years, this is very disheartening to me.
One I just got dx with Interstitial Pneumonia, and am scared to death, the antibiotic i am on is making me as sick as a dog.
I see PCP again on 12th, I see Neuro on 5-1.
Oddly enough coughing is not a big symptom, I kinda wish it was, so it could be productive and get the crap out of me,
I am super weak, with no support system.
have therapist appt on 4th, psych appt on 9th, so i am doing everything proactive to get help that i need.
One of my biggest symptoms right now, other than labored breathing, is that I cannot swallow, have been on liquid protein shake for several days now just to get nutrition. I did tell PCP this but she blew it off as anxiety.
truth is I can barely even swallow liquids as well, and doing my best to force down as much water, and shakes as possible.
I do hope I make a full recovery, but this thread now has me scared to death literally...

[Jules A]

There is more research being done into SUDMUS...which acknowledges sudden death due to MS. They attribute it to autonomic problems caused by MS...cardiac or respiratory. The researchers believe it might be under reported. If there research confirms the incidence , then those deaths will certainly be attributed to MS.

Baby steps I guess which is positive.

In general I have always felt a bit prickly with what feels to me like the notion that we are too fragile to deal with the cold hard truth.

[dalechilders51]

I agree with you all. I'm sick of the candy coating. MS is a horrible disease wheather you live or die.

[JerryD]

dale,
candy coating ... good one. All sizzle ands no steak.
Why don't we all just join in the MS walk...problem solved !

[Wordsgood]

I'm actually a bit afraid to admit I agree with you guys. I don't want to get jumped on for being too negative. I do agree that trying to be positive is important, if only for our sanity.

But I am very tired of the way any dicussion about MS is so candy coated. I'm tired of being told by those in the medical profession that "MS is a Journey" and that it's "no big deal" by the people in my life because all they know about - and are willing to learn about - are stories like Montel Williams and his compression wear.

Not to downplay anyone's MS but come on, really? I am fully aware that I am not currently, and may never be, as bad off as so many people here and everywhere, but....

But well, if this disease is a journey, let me off the train please. I will happily call another travel agency!

The media needs to be more open about the affects of MS, as do medical professionals. Then maybe the general public will open their eyes.

[JerryD]

Kudos, Wordsgood. If you get jumped, I am right there with you. If we, the afflicted, don't bark real loud, MS will continue to be misrepresented, simplified and marginalized. I know '3 college sized' words. I'm sorry. I'm not P.C. Shoot me. Don't promise me anything. Just give me a cure. That's the bottom line. Good luck

[Wordsgood]

Thanks Jerry. We'll be non-pc together!

[arohk]

I don't see the issue MS is a disease which can and does cause death and it should have more resurch done with funding from the governments, I don't personally suffer from it but my wife wordsgood does and as far as I am concerned if prisoners who are responsible for ending up in jail have the rights to t.v. and all the other perks then why do people with a known illness have to fight to get the treatment they need it make no sence to me at all.

[kellygrn]

Autonomic Dysreflexeria

Here is the site that you can order a card to carry with you alerting ER doc about the symptoms of AD. I have had only one episode & luckily had a nurse with me who knew what was happening.

Here are the signs to look for. If it is not treated immediately, you die.

The signs of AD include: * High blood pressure
* Pounding headache, flushed face
* Sweating above level of spinal injury
* Nasal stuffiness, nausea
* Slow pulse, lower than 60 beats per minute
* Goose flesh below level of spinal injury






http://www.christopherreeve.org/site...2IkL0LmP5IvIdF