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Multiple Sclerosis by the Numbers… but Who’s Counting?

Multiple Sclerosis by the Numbers… but Who’s Counting?

More than a million people in the United States have multiple sclerosis… or is it half a million… or a quarter of a million… but then again, who’s counting?

When I was first diagnosed with MS, I was stunned by the number of acquaintances who said they were related to, or knew someone with MS. It seems like everybody has a story, yet most sources indicate that only about 400,000 people in the U.S. have MS. With a population of more than 304,000,000 people, that would make MS quite rare.

In April 2009, the Christopher and Dana Reeve Foundation announced the results of a study conducted by the University of New Mexico’s Center for Development and Disability, that indicated that 939,000 people in the US have some degree of MS-related paralysis. That would mean that the actual number of people with MS is much higher than that.

Current estimates from reputable sources vary:

  • 250,000 to 300,000: National Institutes of Health – National Institute of Neurological Disorders and Stroke
  • 350,000 to 500,000: Multiple Sclerosis Foundation
  • 400,000: Multiple Sclerosis Association of America and National Multiple Sclerosis Society
  • 1,000,000: Montel Williams MS Foundation

So how many people in the United States have multiple sclerosis… why don’t we know, and does it matter?

We don’t know the exact numbers because MS is not tracked by the Centers for Disease Control or any other federal agency. In fact, there is no coordinated effort at all to track the incidence of MS in the United States. The last national study of MS rates took place in 1975, and much has changed since then.

Both the Senate and the House have pending legislation that, if passed, would create separate registries for two devastating neurological conditions — Parkinson’s disease and multiple sclerosis — at the Agency for Toxic Substances and Disease Registry (ATSDR) at the Centers for Disease Control and Prevention.

If the legislation passes, the information collected will provide valuable insights into MS regarding the gender ratio, age at onset, geographic clusters, etc.

Tracking the numbers may also help researchers gain insight into pediatric multiple sclerosis. MS, for all its variations and symptoms, is an extremely difficult disease to confirm in any case. Typically, MS is diagnosed in people over the age of 35, so pediatricians generally do not look for symptoms in children. Mild symptoms in children, especially if they come and go, are easily missed — or dismissed.

The introduction of magnetic resonance imaging (MRI) has enabled physicians to pinpoint lesions in the central nervous system, leading to a diagnosis of MS sooner, and in younger patients, more than ever before.

The National Multiple Sclerosis Society reports that “up to 10,000 of the estimated 400,000 Americans who have MS are children or adolescents. At least that many children also have experienced at least one symptom suggestive of MS. Increasing evidence suggests a slower disease course in children with MS, but significant disability can accumulate at an earlier age compared to individuals with adult onset MS.”

Is the incidence of pediatric MS increasing, or is it that doctors are getting better at diagnosing MS in children? Some research suggests that MS is caused by a combination of genetics and environment. If that’s the case, pinpointing the number of children with MS, in the early stages of the disease, could help researchers find important new leads in the search for a cause, better treatments, and a cure.

Understanding how many people are affected by MS, and who they are, may also have in impact on funding for research and community programs that assist the disabled.

The numbers matter.

You can read the complete text of the proposed legislation and current status at the links provided below. Please urge your legislators to support these bills and people with multiple sclerosis and Parkinson’s disease.

Senate Bill: S.1273 National MS and Parkinson’s Disease Registries Act

House Bill: H.R.1362 National MS and Parkinson’s Disease Registries Act

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes.

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Ann Pietrangelo

Ann Pietrangelo is the author of No More Secs! Living, Laughing & Loving Despite Multiple Sclerosis and Catch That Look: Living, Laughing & Loving Despite Triple-Negative Breast Cancer. She is a freelance writer and member of the American Society of Journalists and Authors. Follow on Twitter @AnnPietrangelo

16 comments

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5:20PM PST on Dec 11, 2010

Dr F R Klenner treating and cureing MS when he died in 1984. At that time he estimated it took 1 year to cure for every 2 years of having the MS. I did not read Dr Klenners papers in depth for I do not have MS. I know that others have taken up his work. More information can be found at
doctoryourself.com …dez...

3:44PM PST on Feb 3, 2010

I, too, am sick of the quackery that surrounds this disease.

It isn't about what you eat. I don't eat dairy. I have MS. It has not gotten better or worse for lack of dairy or not. Don't drink milk, eat cheese ocassionally.
It is what it is...a neurological disease that one can have a genetic predisposition for, broadly, i.e., anglo, northern European descent, living in the northern hemisphere, and female.

2:03AM PST on Feb 3, 2010

Health care is not immuned to the “awareness factor” or the “unawareness factor” either. What I mean by this is a simple psychological phenomenon: What we place our attention on, is what we see.
I really don’t know if there is MORE MS developing in the PacNorthwest (I’m also a Seattlite), or if we are just more “aware” of it in our neck of the woods…either way, I think this might turn out to be beneficial. If we’ve got more of it here, that means more treatment providers capable of treating…and if we’re simply more aware of MS here, then our region is slightly ahead of the game!
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8:29PM PST on Nov 11, 2009

I made the doctor test me for Lyme Disease when I was undergoing diagnosis as my 6th grade teacher was in a wheel chair due to "MS" but 15 years later found out is was Lyme and a year later could walk again as they changed the treatment. I was in Texas at the time, so the doc did not want to test me, but I convinced him, as I am from Michigan and only had been in TX for a month.

I was diagnosed in 2008. I understand the relief felt upon diagnosis. :)

3:12PM PDT on Sep 22, 2009

Dear Ann, dear all,

I was stunned by the immediate effect of the Techniques (in the links below) regarding an 'incurable' autoimmune disease. I will skip all details since the topis is MS and only after the above effects have already happened I checked the site and saw the short video on introducing the techniques. Since I saw the video I just can not but share it with Everyone who may be looking for cure, relief, etc for themselves or a loved one, from MS, and anything else!, and maybe you can just find out more about it on the site.

Please, check for yourselves and, of course, always seek doctors' advice.

Namaste.


http://www.youtube.com/watch?v=75D56JICBRQ&NR=1

and

http://www.emofree.com/

3:03PM PDT on Sep 22, 2009

What I am saying does not at all belittle MS or MS patients. My friend's husband was diagnosed at 19, was a chronic progressive, and died 4 years ago at age 47 from complications of MS. I know how terrible this disease can be. But please make note of the following: Please everyone diagnosed with MS/Lupus/Parkinson's/ALS---any neurological disease, PLEASE get a Lyme disease test. And a top of the line one (which is almost impossible for New Yorkers to get, unless they go to a doctor in CT). Be tested for the tick co-infections as well! Four friends were diagnosed, each with one of the above diseases, and ALL had Lyme disease and not the other one. Lyme is known as "The Great Mimic" because, like syphilis before it, it IMITATES so many other diseases, especially neurological ones. Even if you live in a city (Lyme has been found in Central Park, because birds carry it and fly everywhere), get a Lyme test. It may make the biggest difference in your life. I wish you all the best in your health journeys. God bless!

2:48PM PDT on Sep 22, 2009

DAIRY DOESN'T CAUSE MS. It's not what you eat. Using the Chinese example given...what else is dissimilar between our lifestyles? Perhaps the general lack of exposure to chemicals in the environment?

Or, perhaps that the disease is most prevalent in women of northern European descent who live in the higher latitudes, and it's somewhat inheritable? I bet the men in this same situation had the same amount of dairy...so why is it way more prevalent in women? Something to do with estrogen, perhaps. Doesn't that put the lie to your theory?

Sorry, I'm just sick of the quackery surrounding this disease.

It ain't the dairy, folks.

Diagnosed in 2001, @ 42.

1:39PM PDT on Sep 22, 2009

google LDNers or just LDN
it's changing lives!

1:28PM PDT on Sep 22, 2009

I was diagnosed in 1996 I was 38 yrs. old I had symptoms
in 1991 I had alot of tests done. After a year all the symptoms
went away. Then in 1995 I was in a car accident. I had the
numbness, tingling, pain. It took a year for me to be diagnosed
I had never heard of MS didn't know what MS was.
Over the years I know so many people with MS and when I
meet people they know someone with MS There should
be an official tracking of MS

10:39AM PDT on Sep 22, 2009

I have a few friends that have MS. I did some calculations as to the figures given in the article. If you call 1 in 760 people as having MS rare there is something wrong with your claulations. The 4 numbers given in the article are an eye opener. 1 in 1216, 1 in 868, 1 in 760 and 1 in 304. With these numbers there should be some kind of accurate figures as to how many people have MS.

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Disclaimer: The views expressed above are solely those of the author and may not reflect those of
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