I was thinking that the stat had to be low as well just because there are so many people who don't even know they have it yet. They are getting better at diagnosing MS so this should help. And as you have mentioned, the stat is lower than it probably should be too because new cases are not always reported. Great post as usual Lisa!
Thanks Merely Me,
The best I can figure that NMSS is estimating their numbers is based on their own estimates. (confusing, huh?)
NMSS says that 10,000 patients are newly diagnosed each year. If that's true then, they are are accounting for 40 years of patients at various points in living with MS.
So what is statistically significant about 40 years? Just looking at the life expectancy of diagnosed patients (especially if more are being diagnosed earlier than before), then the number of years used in the calculation needs to be increased.
I don't know. It's not strictly scientific, but something to consider.
Lisa
Hi Lisa. Just wanted to say a quick hello. I'm the moderator for MS Central, here to help with anything I can and maybe even start a debate and engage our members in conversation along the way.
Sorry it has been a bit (I've been away on a much needed vacation with the family) since I have introduced myself. I promise to be much more present; shout out if you need anything.
All the best, sue
Looking for posts or articles on MS Medications? Check out these recent blogs.
Hi Sue,
I do want to thank you for your kind welcome and I hope that you had a nice vacation. I'm still kinda getting used to all of the resources here and where they're located. There's lots to explore.
Actually, I do have a question. Is there a place to see who all is registered here? As folks leave comments or create a Sharepost, I'm slowly getting acquainted with the community and look forward to getting to know folks a little better.
Thanks,
Lisa
The- some what fact that if you have MS- it won't kill you means it is one of the diseases out there that will require LONG term health care costs.. So it does make sense that the government start to track. The "repository" should be 100% anonymous- and should come from physicians offices as you are diagnosed. Good information- Thank you.
Hollymarie,
Thank you for your comment and welcome.
It certainly is important to consider that MS is a long-term, chronic, progressive disease which does require an enormous amount of resources throughout a patient's lifetime. Your idea of counting and reporting patients as they are diagnosed is a smart one. A challenge the designers of the Registry may have is in how to track the many ways MS progresses and how to determine those long-term care needs.
If you are interested in reading the bill in a less legislative format, I somewhat condensed it here.
Again thanks for stopping by and commenting. I hope to see more of you around here.
Lisa
Lisa,
HI! I just found out about my MS.... but I am going to an appointment w/ the
Accelerated Cure Project for MS ... I think they are doing something like what the government SHOULD do... Thank YOU.
http://www.acceleratedcure.org
The Accelerated Cure Project is a great one. It's interesting that they will be included on the Advisory Committee for the potential National Registry as will the NARCOMS folk. NARCOMS stands for North American Research Committee of Multiple Sclerosis Centers. As of April '08 there were 33,000 american MS patients enrolled. Those who participate receive copies of the quarterly journal, Multiple Sclerosis Quarterly Report. Check it out.
Hello
I was trying to find some information about how many MS patients were in Texas for a powerpoint presentation and came across your site. I have always thought the numbers were low since the NMSS said that there were 200 new cases a day diagnosed.
I wish someone would get there numbers straight.
Do you know where I could find some numbers about how many people there are in Texas? I checked the CDC page and did not get anywhere. It is like a maze out there. Sort of like our disease. In one door and out the other. To one doctor and then to another one. What a ride. But like I say.....I might have MS but MS does not have me.
I hope you all have a wonderful rest of the week and a great weekend.
Dorinda 
Hi Dorinda,
I hear ya about trying to find detailed information online. But here's what I did find. What you should do is call each office and ask specifically how many people with MS live within their area.
The Lone Star Chapter in Texas, Houston Office 713-526-8967 - http://www.nationalmssociety.org/chapters/TXH/programs-services/index.aspx
Since its founding in 1955, the Lone Star Chapter has become the Society’s largest chapter in terms of geography, population served and funds raised. The Lone Star Chapter serves 20,000 persons with MS in 174 Texas counties.
The 3 other chapters in Texas have been merged into the large All America Chapter - Panhandle Office, 806-468-8005
Rio Grande Office, 505-243-2792
West Texas Office, 432-522-2143
You can following links to the Texas offices from this NMSS page - http://www.nationalmssociety.org/find-a-chapter/chapter-results/index.aspx?state=TX&zipcode=
Hope that helps some.
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Lisa,
I've wondered about this ever since I was diagnosed. I've always thought that the given numbers were too low.
I also wonder -- have I been counted?
Interesting post.
I wonder that too - have I been counted in the big count?
Just thinking of the number of patients supported by the National Capital Chapter of NMSS, I have serious doubts as to the count. I mean, really, how can my personal neurologist have such a majority percentage in those estimated patients?
Doesn't compute.... (pun intended)