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MS and Paralysis Numbers Don't Add Up

A big new survey of the number of people living with paralysis in the U.S. released yesterday yielded some surprises.

The research -- sponsored by the Christopher and Dana Reeve Foundation and conducted by the University of New Mexico, with input from the Centers for Disease Control and Prevention and dozens of experts -- revealed that some 5.6 million people are living with some form of paralysis. That's a million more than previously known.

The other big surprise, though, is in the underlying numbers. The leading cause of paralysis, the survey found, was stroke -- paralyzing more than 1.6 million people. Next in line, paralyzing almost 1.3 million people, was spinal-cord injury. The third-leading cause of paralysis?

Multiple sclerosis - paralyzing 939,000.

How's that again?

That's more than twice the number of people diagnosed with MS in the U.S. and only a fraction of people diagnosed with MS suffer paralysis.

The National MS Society says about 400,000 people in the U.S. have a medical diagnosis of MS. And while officials there say they respect the Reeve Foundation and the integrity of the new survey, they're not going to alter their count based on this new information.

I went back and forth between the folks associated with the Reeve Foundation survey and the MS Society, trying to pinpoint the cause of the discrepancy. It seems to boil down to how MS and MS-related paralysis are defined and whether people in the survey who reported their paralysis was due to MS had in fact been diagnosed with MS.

Pinning these numbers down is important. Knowing how many people are affected by a condition, be it paralysis or MS, helps society determine what resources to direct toward programs and services for those affected and toward seeking new treatments -- or a cure.

That's why the MS Society has for years advocated for a national MS registry and surveillance system. The group is now tracking HR 1362, a bill before the House of Representatives that would establish such a registry for MS and another for Parkinson's disease. The registry would reside at one of the CDC's agencies and would draw on the CDC's demonstrated capacity to track incidence and prevalence of diseases, from influenza to measles. The society hopes to see a companion bill go before the Senate this summer.

I don't care to pit one of these worthy group's numbers against the others. But wouldn't it be nice to know which figure comes closer?

By Jennifer LaRue Huget  |  April 22, 2009; 7:00 AM ET
Categories:  Chronic Conditions , Health Policy  
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Comments

Numbers of MS patients is a hard one. I know before I was "diagnosed" I spent a year in limbo. I had the lesions on my brain and spine, and my lumbar puncture was suggestive of MS. However, I was diagnosed with "probable MS" and told I would not be diagnosed as having MS unless I had a second flare.

That happened, but people go years in the MonSter limbo. I try to tell people in the limbo category if I had my choice I would forever have lived in "limbo" because that would have meant nothing further went wrong. I wouldn't even have minded continuing to take the shots daily.

Other mitigating issue is a large number of MS patients never have a second flare whether they take disease modifying drugs (DMDs) or not. I've seen studies saying as high as one third fall into that lucky category.

MS is also a disease diagnosis of exclussion. It's not A. It's not B. It must be MS. Getting an accurate count for the number of people with MS seems a ludicrous task from a logic standpoint. That same logic is why I am not even convinced MS is one disease. The progression and the symptoms vary so widely. All we know is it's not A or B.

All of these and many more make diagnosing MS dificult. And with the dificulty of diagnosing comes the subsequent dificulties quantifying the problem's impact on our healthcare system.

On the paralysis issue, are we talking full? I can't move but one of my toes, and I have reduced sensation from the waist down. What are we talking about as a measurement. From talking with MS groups, partial is notthat uncommon among people with MS. Full is uncommon.

Posted by: deafboy220 | April 22, 2009 1:08 PM | Report abuse

Diseases of any kind should be attacked by the institution in particular if they are related to cancer or in this case is as cerebral palsy. I would agree with the board to be promoted at the end of the article so that a joint activity.
Herbal Remedies

Posted by: HerbalRemedies | April 23, 2009 7:35 PM | Report abuse

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