I don't get the math..

[J-Bo]

Please consider this:

There are only about 400,000 people in the U.S. who have MS, right? But everyone you meet seems to know someone(s) who has it, and it’s usually someone fairly close to them. There are about 700,000 Finnish people in the U.S.--almost twice as many. And I can’t say I know even one Finn and bet that most people don’t. So how does that work? I’m not saying that everyone who says they know someone with MS is lying. I just can’t figure out how it’s possible.

Maybe it’s all done with mirrors, and I haven’t been in the club long enough to know the secret handshake and all the insider info like that yet—maybe I have to make it to 1,000 posts here, and then the 9^th Degree MS Masters will let me in on all of the mysteries. So if nobody answers this post, that's probably why. Not because it's a silly, pointless question, or something like that...

[Seasha]

It's not a silly, pointless question, J-Bo. When I was dx in'99, all the literature said the same - 400,000, so I have always found it questionable as the years have gone by. Some of the literature now says over 400,000 and anywhere from 2.5 - 2.7 worldwide.

I guess it's hard to know really - there isn't a national registry as far as I know. Maybe someone else can shed more light on this??

[MrsBones]

That 400,000 figure was from 1978 or so. Since there is no registry or reporting to an agency like the CDC when a person is dxd, the only figure we have for a total is that number from a count done in the 70s. An era, I might add, when not all drs even bothered to tell their patients they had MS because there was no treatment. A relapse was just given some vague dx and they were maybe given steroids.

We honestly don't know how many of us there are. Take this as an example. From the Christopher and Dana Reeve Foundation, it's a few years old: http://www.christopherreeve.org/site...Paralysis.htm#

The chart shows the causes of paralysis by percentage. The total subjects were 5,596,000. Of those, in 17%, or 939,000, the paralysis was caused by MS. Think that through. Those are only those who have some degree of paralysis. As we know, that doesn't happen to all of us.

I say, ignore the numbers since there is no real way to know just how many of us there are.

[dyin_myelin]

I've often thought the same thing. It appears in the rare diseases charity listing but right after I was dxed my landlady assured me it "wasn't an orphan disease." And some people are discovered to have it post-mortem, and I'm sure some people drive off embankments after getting blurry vision or foot drop without knowing what was up. It's a shame, with better numbers we could probably get more funding.

[cosake]

Here is a link that I was recently sent about a bill to help collect information about patients with neurological disorders that could help determine a more accurate number of MSers in the US, as well help with research and funding.

http://www.nationalmssociety.org/Get-Involved/Advocate-for-Change/Current-Advocacy-Issues/Advancing-Research-for-Neurological-Diseases

[JerryD]

That sounds like a good project for the National MS Society or for the NIH. These groups are supposed to be advocates for the citizens of the US that either have MS or, in the case of the NIH, US citizens that are diagnosed with any disease. Maybe it is time to find out, without 'guesstimating' our numbers.

[J-Bo]

Actually, I believe this is also a job for the CDC. I always thought of them as focused on contagion, but they collect and compile data on cancers, which are not classified as infectious diseases, so why not MS too? Unfortunately, they, as well as the NIH have fallen victim to government spending cuts, which is a shame because both agencies are excellent examples of government doing good for its citizens. How could anyone seriously justify cutting these things? I'll never understand.

Right now, CMS (Centers for Medicare & Medicaid Services) is trying to drag the healthcare industry kicking and screaming into the kind of electronic record keeping that everyone else has been doing since the end of the last century. Google "meaningful use" and you'll get an idea of what they're working toward with respect to clinical data collection/analysis. I think it's a good thing, and way overdue.

(Disclaimer: I work in health IT in a peripheral way, so I might be somewhat biased about the virtues of electronic health records.)

[Seasha]

I found this quite interesting in light of this discussion of accurate counts - http://www.nationalmssociety.org/Abo...llNationalNews

Be sure to read the Full op-ed The Hill highlighted in red at the bottom!

[JerryD]

Thanks for the web address, Seasha. Given that knowledge, what is the motivation for Biogen or Teva (or any of the other drug manufacturers) to discover and market a curative treatment?
Who would willingly kill the goose that lays golden eggs?











he others

[Mamabug]

Actually, I've had MS for thirteen years, and I have the opposite experience. I know very few people with MS, and, there aren't a lot of ppl I know who know others with MS either.

I have one friend, who lives in CA who has MS. Actually, though, I met her here, we found we had a lot of things in common, and, at the time, slthogh I live in KS, her parents happened to live only 30 miles away from me. We used to see each other once a year, whenever she came to visit them. They no longer live around here though, so we, now, are just facebook friends.

Would love to know others with MS. Actually, I am considering, in a year or two, maybe starting a support group in my community of 18,000 people, for people with chronic illnesses. I suspect it would be easier to find ppl interested in attending if the group were more inclusive, since we are not a big city, and, really, I see a lot of similarities that we share with others whose chronic illnesses are different from mine.