This Is MS Multiple Sclerosis Knowledge & Support Community

Curiosity question: Why does the NIH state 150,000 cases and the NMSS 400,000? Anyone know?

Hi Chris,
I looked around and I'm not sure which NIH page and which NMSS pages you were looking at which quoted the different numbers.
Bob

Found it on the NMSS site.

Hi Chris,
On this NMSS page http://www.nationalmssociety.org/Highli ... umbers.asp the disparity in data is not as great

The National MS Society estimates that some 400,000 Americans have MS. The NIH estimates 250,000 to 350,000, while others suggest there are many more. Why is it difficult to be certain how many people have MS? More importantly, why do we need to know?

and actually reading this page might help to explain the situation regarding the disparity in numbers.

Bob

I guess what I am trying to say here is why do we not have an "accurate" count, especially now in this day of modern technology? One would think this would be important. Example: I asked our health dept. here in SC for the demographics of Lyme Disease. Got a quite precise report with lots of relevant informatin for the past 10 years, including hospitalizations, etc.

Just find this kind of curious.

i think that the millions of people world wide with ms put a bit of reality on the stuff thats talked about. if you recearchers could just find one thing in common with all of us we might be on to something..

Chris55 wrote:I guess what I am trying to say here is why do we not have an "accurate" count, especially now in this day of modern technology?

Hi Chris,
I agree that there isn't really an accurate count and that is important. Obviously the higher the number the higher the concern and the higher the amount of research money available.

What would help that situation enormously is if something specific only to MS could be isolated so that researchers could develop a conclusive test confirming whether or not someone has MS. Who knows how many people have MS and don't know it yet? My wife's MRIs show at least 8 lesions and so far she's only had one bout with slurred speech about a year ago. If we'd have waited another week before going to the doctor the slurred speech probably would have gone away on its own and after that who knows when she would have been diagnosed?

I can't blame anyone for the innacurate count. I'm not sure how an accurate count could be done at this point.

Bob

Lyon, this is bizarre. My daughter has about 3 lesions and had a "continued" attack with various and sundry symptoms that lasted about 1 1/2 years!

That's just it...I believe an accurate count COULD be had. If I got all the information on LD, which isn't even acknowledged as being "real" by most medical professionals, why isn't the # of MS cases available? It's just strange to me.

Another example...I have a co-worker who is addicted to narcotics (severe!). She goes from doctor to doctor, sometimes as many as 3 in one week, getting 6-7 presciption drugs--at least 5 addictive--and no one is the wiser??? With the computer capabilities we have now, filling prescriptions could easily be input into a computer by SS#. Heck, she uses the SAME pharmacy, just in different locations and one has no clue what the other one is doing. As my boss pointed out--the drug companies would prefer it this way--more money for them!

I think we have two very significant clues with MS but almost no research! When a female with MS gets pregnant, the disease stops. (My daughter's MS neuro's advice everytime she walks in the office? Get pregnant and stay pregnant as often and as long as you can!) Males are about 25% likely to get MS but their disease is usually rapid. Again, almost no research.

I think these two "FACTS" could be incredibly important--don't you???

Chris55 wrote: That's just it...I believe an accurate count COULD be had. If I got all the information on LD, which isn't even acknowledged as being "real" by most medical professionals, why isn't the # of MS cases available? It's just strange to me.

Hi Chris,
I hate to sound arguementative because it sounds like you have your heels set but there are two kinds of statistics, accurate and inaccurate. The people who hand out inaccurate statistics are honest and the people who hand out the accurate statistics are damned liars.

Despite the way it seems, the Lyme statistics are probably every bit as inaccurate than the MS statistics. In large part because, as you mentioned, a lot of medical professionals refuse to diagnose Lyme's if they were presented with a classic case. Researchers do the best they can when compiling statistics and that's all that can be done. Statistics are helpful in a general sense but they aren't ever totally accurate.

I think we have two very significant clues with MS but almost no research! When a female with MS gets pregnant, the disease stops. (My daughter's MS neuro's advice everytime she walks in the office? Get pregnant and stay pregnant as often and as long as you can!) Males are about 25% likely to get MS but their disease is usually rapid. Again, almost no research. I think these two "FACTS" could be incredibly important--don't you???

I do and I think an increasing number of people do, including researchers. I think two or three instances of research in that direction have passed through this forum in the last few months. That could mean that worldwide there could be 30 researchers working on it that we aren't aware of.

I share your frustration but these things really are far more complicated than it would seem to us laymen. Things usually aren't nearly as simple as we would like them to be.

I know all the parts of a car. I know the tools and I know which direction to turn bolts to loosen and tighten them. Even then, if I tell my wife that I'll have the brakes replaced on her car in an hour, you can bet that I will still will be working on it four or five hours later. It's not that I like laying under a car for long periods of time and it's not for lack of wanting to get the job over and done with.

Imagine how time consuming it is for researchers who are surrounded with situations in which nothing is familiar and nothing is certain and almost everything is for the first time. Progress is understandably very slow.
Bob

Bob, from a research standpoint, I totally agree MS is a very complex disease. It is just frustrating when there are clues, albeit small, they do not seem to be "capitalized" on. The main focus is autoimmune and we both know how I feel about "locking" into that arena! The research that veers outside of that arena is too small, too limited and does not keep progressing.

I have read thousands of research trials that have been conducted over the years and there have been some very interesting and impressive ones. They all seem to simply "just stop".

Not "shooting" anyone in particular; just wish the research could "broaden" a little more.

Thanks as always for your wise input!