The reason that the literature states that death due to MS is rare is because the researchers and statisticians are using the entire population of MS'ers to calculate the rate of death....therefore yes it is rare....
then they often calculate the rate of death due to MS based on the the rate of
death to other causes (cancer, accident etc.) for the entire population
of a country - and it becomes rarer still.
Just like they use the entire population of MS'ers to calculate the rarity of PPMS = 5-10% (depending on who you read)
then you break down the rest:
SPMS = 40-50% of all RRMS go on to be SPMS
RRMS = the rest.
Now if you break down the RRMS folks by severity; then you will see that
the majority of them have mild to moderate symptoms - most never
accumulate enough disability to become severely disabled because of the
length of time in years that it takes for them to become disabled -
They invariably die of other natural causes, cancer, accidents, suicide,
murder etc. before they become too disabled. This is especially true if
you calculate the age at onset of the disease.
For example: disease onset at 45 (this is just for the point of example) a
mild to moderate relapse/remit rate can take 20 - 30 - 40 years to
disability (wheelchair) - well now you have folks in there 65-75- 85
age bracket - so they are likely to drop off the perch for other
Again depending on who you read, the entire population of MS'ers is anywhere
from 350,000 to 500,000 (in the USA). so, based on that figure, you are
only looking at 5- 10,000 PPMS folks....out of an entire USA population
of 200+ million! So, allocation of funds for research becomes even more
The likelihood of developing lesions in the brain stem is rare amongst even
our population - but the likelihood of us developing lesions in the
cervical to upper thoracic is not - these areas control breathing.
The rate of death due to complications of MS amongst just the progressive
community - is not rare....but is rare to the whole population of
So, hence my drive to educate the general public, my drive to create a
community for support, education and friendship - and mostly why I try
to encourage all of us to live and to find the most joy we can - while
Not wanting to be the 'voice of doom', but, literally slowing our
progression is buying us time to live......and unless we die from
cancer, accident, heart disease or murder (sorry I live in Atlanta -
one must consider the news!) we are all going to die either due to MS
(uncontrolled seizures, autonomic nervous system failure due to
lesions) or more likely due to complications from MS (respiratory failure, pneumonia, kidney failure - due to uncontrolled kidney infections)....
the only question then remains not "if" but "when"....and again location of
lesions, severity of the progressive rate, age of the person all play a
part of the 'when'....remember that just like the RR folks
"progression" does not always equate with "rapid".
What may be rare in the general MS population becomes less rare in a
community of only progressives.....we have at least a 25% of our
population in this community here who have PPMS for example.
So, my philosophy is as always - plan for the worst, hope for the best and
don't waste a precious moment of time - just like the ABP (able bodied
persons) we are all gonna die - life is the only thing you don't come
out of alive! lol
Unfortunately literature, the Montels of the world all base their "knowledge" and
therefore "news releases" and the garbage we get fed when first
diagnosed on the 40% of RRMS folks who are mild to moderate. Have you
noticed that anything you pick up about "MS" is almost always stating
that "Most Ms'ers lead full and active lives, majority do not become
disabled blah blah"???? when you add the progressives - all of us -
including the "projected number expected to become SPMS - we actually
out number the "normal picture" of MS.
So, then why don't they tell the truth?? because they don't want to scare
anyone - after all they don't know which of the people diagnosed are
going to be severely disabled - wheelchair to bed - so no need to scare