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Fear that can't be erased

The diagnosis of Alzheimer's was rushed--and wrong. But for a family, the specter of the disease remains.

June 27, 2005|Marc Siegel | Special to The Times

ABOUT a year ago, Pearl, a patient whom I'd been treating for high blood pressure, suddenly became more forgetful. She was 83, and her husband, who had lived with her for more than 50 years, said she was having trouble remembering dates and appointments. Her daughter, who saw her weekly, had begun to notice a change from one visit to the next. She had trouble forming words and knowing what time of day it was.

I sent her to a neurologist, who ordered an MRI of the brain. This test wasn't revealing, but after the consultation he called me and said he was diagnosing her with early Alzheimer's disease.

Despite the lack of a confirmatory test, the neurologist did say he was sure of his diagnosis "on clinical grounds." By this, I knew he meant that her memory loss, growing confusion and language difficulties were characteristic of Alzheimer's disease.

I expected her to get progressively worse, and because I continued to see her regularly for her high blood pressure, I checked her orientation and memory on each visit. At first there was little additional change.

But on one visit I found that her sodium count was a little low -- 131, with normal above 135 -- which I suspected was due to the diuretic she was taking. I changed the medicine and followed the sodium count until it normalized.

In the meantime, she was scheduled for a routine colonoscopy, a test that I'd been recommending for years. It was only when she became confused that her daughter, taking over her healthcare, had scheduled the test for her. But when Pearl drank the cup of bitter-tasting phospho-soda prep, she began to vomit, becoming dehydrated. She went to the emergency room of my hospital where she was found to have a very low sodium count -- 112. She was also very disoriented.

I admitted Pearl to the hospital and ordered intravenous saline solution, which she received for several hours until her sodium corrected and she was no longer dehydrated.

Remarkably, I found that she was also much less confused. A lung doctor who had treated Pearl for many years for occasional bronchitis came to visit her in the hospital, and she cheerfully complimented the doctor on her new hairstyle. The lung doctor remarked to me that she thought Pearl was very observant -- and grumbled that her own husband hadn't noticed her hairstyle change.

It soon became apparent that our patient was becoming less confused and less forgetful. I began to think the loss of memory had been related to the low sodium or a transient depression. She was improving and did not appear to have Alzheimer's disease.

At first, the neurologist didn't agree. Ultimately, when Pearl resumed doing crossword puzzles and knowing the details of others' lives, even the neurologist -- though still not convinced -- admitted that the sodium aberration had been the more likely culprit. Because 4 million Americans suffer from Alzheimer's disease, including almost half of people older than 85 (Pearl was close at 83), it was understandable that the neurologist had considered this disease.

But the diagnosis had been devastating to the patient's family members, who had been preparing themselves to see her rapidly lose her mind. This "sentencing" seemed particularly unjust in light of the unexpected reprieve.

For me, the case was a reminder that Alzheimer's is still a "diagnosis of exclusion." Pearl had received good care, and she'd improved, which was after all our main goal as physicians. But like the neurologist, I'd been too quick to believe the worst, and to leak that belief to the family, dashing hope.

Alzheimer's has a devastating outcome attached, and because there are many other conditions that can cause similar memory loss and confusion (depression, infection, metabolic disturbances of all kinds), rushing to give a stigmatizing diagnosis such as Alzheimer's is unwise unless a doctor is almost certain. Without absolute tests at this point, and because Alzheimer's disease evolves, diagnosing it properly means observing a trend, not making a pronouncement on one day's observations.

As doctors, we are more effective and better accepted when we consider the effect of the news we bring as well as the likelihood that our judgments are correct. Sometimes making a proper judgment means waiting even beyond the point when a diagnosis seems obvious. There is no rush to assume a patient has a disease with no treatment, especially while alternatives still exist.

Today, Pearl remains vital, somewhat forgetful, but far less confused than a year ago. Her doctors have decided she does not have Alzheimer's, yet because we raised its specter, it still hangs in the air.


Dr. Marc Siegel is an associate professor of medicine at New York University's School of Medicine and the author of a forthcoming book, "False Alarm: The Truth About the Epidemic of Fear."

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