Sign in

or Register now

MultipleSclerosisCentral.com

See all of our health sites at www.HealthCentral.com
Thursday, November, 12, 2009
  • Font size
Receive a FREE Osteoarthritis of the knee pamphlet. Start here.

So how many people in the US have MS?

Lisa Emrich
Lisa Emrich
Close
Musician, Patient Advocate, and Founder - Carnival of MS Bloggers

Lisa Emrich is a professional musician. She happens to live with...

Lisa Emrich

Tuesday, August 26, 2008
View All of Lisa Emrich's Posts
Recently, I was talking to a friend of mine about writing for Health Central and the topic of how many people have MS in the United States came up.  The best I could answer was that the National MS Society (NMSS) estimates that there are 400,000 Americans who live with multiple sclerosis.“...
  1. Who's Counting?
    Mandy Crest
    Tuesday, August 26, 2008 at 02:10 PM

    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.

     

     

     

    Reply
    re: Who's Counting?
    Lisa Emrich
    Tuesday, August 26, 2008 at 07:25 PM

    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)

    Reply
  2. I bet you are right...
    Merely Me
    Tuesday, August 26, 2008 at 02:15 PM

    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!

    Reply
    re: I bet you are right...
    Lisa Emrich
    Tuesday, August 26, 2008 at 07:30 PM

    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

     

    Reply
  3. Untitled Comment
    sue
    Tuesday, August 26, 2008 at 11:00 PM

    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.

    Reply
    re: Untitled Comment
    Lisa Emrich
    Saturday, August 30, 2008 at 07:44 PM

    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

    Reply
    re: re: Untitled Comment
    sue
    Saturday, August 30, 2008 at 10:37 PM

    Hi Lisa.  I am going to ask Sofia if there is a way to generate that list.  She may be able to do it at her end with the right authorization.  Will get back to you. 

     

    All the best, sue

    Reply
  4. How many people in US have MS?
    Jen
    Wednesday, August 27, 2008 at 09:30 PM

    TOO MANY PEOPLE IN THE US (AND THE WORLD AT LARGE) HAVE MS.  PERIOD.

     

    Hi Lisa.Tongue out

    Reply
  5. Government planning
    Hollymarie
    Thursday, August 28, 2008 at 10:07 AM

     

    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.

    Reply
    re: Government planning
    Lisa Emrich
    Thursday, August 28, 2008 at 10:29 AM

    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

     

    Reply
    re: re: Government planning
    Hollymarie
    Thursday, August 28, 2008 at 08:48 PM

    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

    Reply
    re: re: re: Government planning
    Lisa Emrich
    Friday, August 29, 2008 at 06:57 PM

    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.

    Reply
    re: re: re: re: Government planning
    Dorinda Harper
    Wednesday, September 30, 2009 at 04:07 PM

    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 Smile

    Reply
    re: re: re: re: re: Government planning
    Lisa Emrich
    Thursday, October 01, 2009 at 12:16 AM

    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.

    Reply
  • Font size
  • Bookmark
  • Thank you for your input
  • Save
  • RSS
  • Report Abuse

Ask a Question

Get answers from our experts and community members.

View all questions (997) >