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MS: After Suspicious Scan, Just Wait and See?

So you go to the neurologist for, say persistent migraines, and the doctor orders an MRI. What happens if that scan turns up signs that you might have multiple sclerosis, even though you have no symptoms?

That's the question raised by a provocative study published Wednesday in the on-line edition of the journal Neurology. Researchers led by Darin Okuda at the University of California, San Francisco tracked 44 people whose brain scans -- conducted for reasons having nothing to do with MS -- revealed abnormalities that looked like the damage caused by MS, a chronic, incurable autoimmune disease. Within a median of 5.4 years, 10 of those patients had developed clinically diagnosed MS. Of the 41 people who had followup scans, 24 showed signs of further damage suggestive of MS.

As recently as two decades ago, an MS diagnosis was a hopeless thing, as there were no drugs to modulate the disease's progress. Today a handful of injectable medications are available. None cures the disease, but many people -- including me, after my 2001 diagnosis via MRI and lumbar puncture -- have apparently benefited from the drugs' ability to alter MS's progress.

Of the participants in the University of California study, seven chose to go on medication. Despite having no clinical symptoms, they started treatment for MS following the initial, suggestive MRI.

Most MS experts believe that early diagnosis and treatment are key in keeping the disease under control. Untreated (and, sadly, even sometimes when it is treated), MS can cause anything from mild symptoms such as occasional tingling and numbness to more severe disabilities such as difficulty walking, impaired vision, and even death.

An editorial (written by Dennis Bourdette of the Oregon Health & Science University in Portland) accompanying the article argues that you can't treat for MS on the basis of a suspicious MRI alone; without symptoms or other physical signs of the disease, treatment's not warranted, he says. And indeed, for those in the study who didn't develop MS, treatment -- which can cost several thousand dollars a month -- would have been out of line.

But what about the folks who did end up with MS? Might their disease have been prevented, or at least slowed, had more of them been treated on the basis of their MRIs alone?

The dilemma extends far beyond the realm of MS. As more and more people are undergoing body scans for all kinds of reasons, lots of pathologies that might otherwise have gone undetected are turning up. That's a mixed blessing: Accidentally catching sight of a tumor allows you to treat it, perhaps giving doctors the upper hand. But scans also raise the possibility of false positives and further unnecessary testing, as well as the specter of expensive and sometimes debilitating treatment for diseases that might have remained unnoticed for years.

And with MS, a complicated disease to diagnose and treat, matters aren't cut and dried. The disease's course is unpredictable, with or without treatment, and there's no telling who's going to have a mild case and who will have it worse.

I am forever thankful to have been diagnosed early and to have access to medicine that seems to be keeping my symptoms at bay. But many people opt not to go on medications even after they're diagnosed, preferring to wait and see if and how the disease develops.

What about you? If your MRI showed tell-tale signs of MS, would you clamor for treatment? Or would you be willing to wait for more definitive evidence of disease to appear?

By Jennifer LaRue Huget  |  December 12, 2008; 7:00 AM ET
Categories:  Chronic Conditions  
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Comments

The Washington Post must be a pretty sweet place to work if they'll bankroll drug treatments worth thousands a month!

There is such a thing as mis-diagnosis. They can't biopsy your brain the "prove" MS. I'd wait for symptoms unless I had a health plan that would foot the bill.

Posted by: RedBird27 | December 12, 2008 8:26 AM | Report abuse

Jennifer: "If your MRI showed tell-tale signs of MS, would you clamor for treatment?"

But isn't that the problem, Jennifer? MRIs cannot provide definitive "tell-tale" signs of MS?

The question is, if we did these scans on everyone of a certain age, how many of them would show these "signs" of MS? Then, how many of those people would go on to actually develop MS? That would tell us a lot more about the diagnostic power of these tests.

Posted by: rlalumiere | December 12, 2008 9:44 AM | Report abuse

My husband suffered from optic neuritis about 30 years ago and was diagnosed as having MS. The symptoms improved and at that time there wasn't a whole lot to treat MS with. He has had very few problems since -- just a couple of optic neuritis attacks since. His vision isn't the greatest and can't be corrected with glasses but with no medication for all these years, he has no other MS symptoms. He visited an MS specialist recently and was told that had the doctor not seen the MRI he would say he didn't have MS.
All of the MS drugs have side effects and my husband is happy that he never took any. The MS specialist said the drugs would not have made him any better than he is without them.
There is such a thing as a very mild case and that is apparently what he has and I might add that his son has the same thing and has also chosen to take no drugs, though he could have gotten them free through a research project.
Not all MS is worth treating. The tough part is knowing which cases will advance. I suppose time will tell.

Posted by: bghgh | December 12, 2008 12:40 PM | Report abuse

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