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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)

PRMS =2-5%

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 reasons.

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 scarce.

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 MS'ers.

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 we can.

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 anyone! sheesh!!


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