Reality Bites

RRMS Prognosis~
(Warning: not-Candy-coated!)

It is a troubling fact that almost all newly diagnosed Relapsing Remitting Multiple Sclerosis (RRMS) patients and their families, upon requesting and expecting an honest assessment of what to realistically expect in the future, are deliberately fed "candy-coated" or downright misleading statistics. Whether the BS comes from a physician or from the NMSS (National Multiple Sclerosis Society), as a true believer in accurate thinking and complete information, getting manipulated when I've asked for the truth really bothers me!

This widespread withholding of the more discouraging statistics re: the likely long-term prognosis for the average MS patient is no doubt done with good intentions; it's simply an attempt to avoid "unduly upsetting" the newly-diagnosed and their loved ones. In fact, my own doctor told me that not too long ago, many doctors never even told their MS patients that they had (or might have) MS, because conventional medicine had nothing to offer anyway, so they rationalized lying to the patient by saying that "the stress of learning about the diagnosis could bring on an exacerbation of the illness".

Yeah? Well baloney I say; overwrought baloney.

Knowledge is power! And keeping patients in the dark is at best misguided, and in fact outright insulting, patronizing, eventually pointless, and is a perfect example of an outdated, paternalistic approach to the doctor-patient relationship.

Keeping the patient in the dark will eventually destroy trust as surely as it utterly defies the concept of patient education and "informed consent", not to mention plain truth. Those of us actually living with the disease have to experience whatever exists and lies ahead for us regardless of what we're been told, and I for one find that being lied to is generally much less helpful than actually being fully prepared with accurate information.

Those incomplete or misleading statistics to which I refer typically stop deliberately at 15 years after onset of symptoms; they really don't like to mention what happens after 20 years, because by then statistics are noticeably bleaker.

So if you're sure you're ready...

MS Statistics at 20 years out, Unsweetened

1. 90% of RRMS patients will develop Secondary Progressive MS (SPMS)

2. 80% of MS patients will have at least some degree of bladder dysfunction

3. 80% will have cognitive problems (the ability to multi-task in particular tends to ebb)

4. 70% will have at least some degree of sexual dysfunction

5. 50% will not be able to walk unaided

6. 66% will have at least some degree of pain from MS

7. 40% will never be pain free

8. 33-50% will have at least some degree of dysphagia (difficulty swallowing)

9. 10% will be institutionalized due to severe cognitive dysfunction resembling dementia

10. Up to 15% of MS patients die by suicide*.
*In 1991, the death by suicide rate was found to be 7½ times greater for MS patients than for non-MS patients; recent, larger studies however, indicate the suicide completion rate among MS patients is much higher, closer to 15% overall.