Precursor to MS... Too Much Information?
What if doctors discovered that you have a precursor to multiple sclerosis… would you want to be told? If so, what would you do with this information?
"Dr. Darin Okuda of the University of California, San Francisco studied brain scans done on 44 people for various health reasons, such as migraine or head injuries. All had abnormalities similar to those seen in people with MS, but none had been diagnosed with the disease. Okuda continued to follow these people to see if they developed the disease and found that within 5.4 years, 30 percent had developed MS symptoms." The study appears in the Journal of Neurology.
A statement was careful to point out that further research is needed before doctors begin treating people with pre-MS abnormalities.
Should patients be told of these pre-MS abnormalities? If so, should they begin receiving treatment for MS?
All indications are that the earlier the treatment, the better the chances of staving off permanent disability. But what of the 70 percent of the study group who did not develop MS? Should they be worried about the dangers of taking the powerful MS drugs?
And what about medical insurance? Would you want to be branded with the words "multiple sclerosis" if you only had pre-MS abnormalities that may or may not develop into MS? Would MS become a pre-existing condition when symptoms do appear?
Advances in medical science are testing our boundaries in ways never before imagined. How far into the future do we want to see, and what if we are wrong? With our health care system in crisis, who among us would want to have the possibility of future illness or disability on our medical records?
I can definitely see the point when it comes to a family history of cancer, for instance, where life and death decisions must be made as quickly as possible. Such warnings will save lives.
The question is intriguing… if doctors have tests indicating a future illness, should they be obligated to inform patients… and insurance companies? With medical records increasingly being kept online, how safe will that information be? Could the simple possibility of disease on the record lead to discrimination in medical insurance coverage, housing, or employment?
I was diagnosed with multiple sclerosis almost five years ago. From this vantage point, I don’t believe I would have been better served by knowing of the possibility years in advance. But that’s just one case.
Thought-provoking as it is, I have yet to decide just where I stand.
How about you? Roll back the years before your own diagnosis. Would you have wanted to know? What would you have done with that knowledge?
Mandy wrote for HealthCentral as patient expert for Multiple Sclerosis.