DIAGNOSIS ROULETTE

Over her life, June Sams has been told she has schizophrenia and four mental health disorders: bipolar, post-traumatic stress, major depressive, and personality. The 60-year-old Chester woman's current diagnoses - she thinks these fit - are major depressive and generalized anxiety disorders plus PTSD due to childhood trauma.

A doctor told Elisa-Beth Gardner, 51, of Swarthmore, that she had borderline personality disorder (BPD) in 1996. Three months later, she was told she had bipolar disorder. Then a doctor said she had both. Her current doctor thinks she has BPD and PTSD, but not bipolar.

When Sonia Weaver, now a 43-year-old Lancaster resident, got sick in 1997 - as a new mother and University of Chicago divinity school student - a psychiatrist said she had postpartum depression.

The next doctor she saw diagnosed bipolar disorder. Another found generalized anxiety disorder. Most recently, a psychiatrist said she has recurrent major depressive disorder, not bipolar disorder.

"I'm the same person reporting the same experiences every time," said Weaver, who blames medication she took for bipolar disorder for lasting medical problems. "It's really sort of a scarily random process where you get your label."

Such stories are not unusual. Different doctors give people with serious mental illnesses different diagnoses. Those diagnoses affect which drugs patients are given and how they see themselves.

"I see it all the time, people coming in with many, many diagnoses," said Kenneth Certa, a psychiatrist at Thomas Jefferson University and Hospital.

The American Psychiatric Association, which met here in May, is nearing the end of a controversial revamp of the DSM-IV, the Diagnostic and Statistical Manual of Mental Disorders - the book that classifies human emotional malfunctioning. Leaders say they are trying to bring the book, which was last revised in 2000, in line with modern science and make diagnoses more precise. If doctors can't agree on who has, say, personality disorder (in the DSM-IV, 256 combinations of symptoms can get you that diagnosis), it makes it hard to agree on how to treat or study it.

One vocal group of critics fears the new DSM-5 will expand what is deemed abnormal. Advocates for those with autism fear the opposite, that a narrower definition may deprive some of needed help.

Others, though, say there's not enough science yet to get the diagnoses right. Until there is, classifiers are shuffling people with similar symptoms together without knowing whether they truly share similar underlying brain abnormalities.

"No single organizing principle or hierarchical choice is possible based on the current state of knowledge," Steven Hyman, a Harvard University professor and former director of the National Institute of Mental Health, told fellow psychiatrists at the meeting.

The NIMH is spearheading an effort to classify mental illnesses on the basis of what has gone awry in the brain. Patients might then get a diagnosis related to which neural circuit is malfunctioning.

"Thirty years from now, they won't use these diagnostic terms anymore," said William Dubin, chair of Temple University School of Medicine's psychiatry department. "We'll talk about orbital frontal striatal disconnections."

While those crafting the new DSM hope it will increase the odds that multiple psychiatrists will reach the same conclusions about a patient, Dubin is skeptical.

"We know that it takes almost 20 years for new evidence to be incorporated into practice, which means to me the field doesn't change until the next generation of physicians are trained using the new evidence," he said.

When the APA met here, psychiatric "survivors" outside protested their "labels." They said doctors should treat them as individuals.

Doctors say that's not practical. They need a shared language, and medicines work better for some conditions than for others. It can be dangerous, for example, to give antidepressants to people with bipolar disorder.

"We have to have diagnoses," Dubin said. "We have to. We can't function without them."

After listening as APA leaders discussed the proposed revisions for hours, it was easier to see why the labels might seem arbitrary to patients.

The new book is not immune to politics. A researcher declared that one of her group's goals was to ensure that people now getting autism services keep getting them. The wording of some descriptions was changed after lobbying from patient groups.

Because of a lack of data on the subject, narcissists were dumped from the personality disorders. But they got back in because, even though they haven't been studied all that much, everyone knows there are a lot of narcissists and they are a staple of psychiatric practice.

Trying to impose order on our obsessions, delusions, sexual oddities, fears, and perceptual distortions at this stage in the science is like trying to organize flora and fauna without access to DNA testing.

Real people are a messy, complicated lot who defy easy categorization. "Our patients actually have not read and internalized the DSM categories to which they are supposed to belong," Hyman dryly pointed out.

Many psychiatrists see the DSM as an evolving document meant to help researchers and give doctors a code to send insurance companies for payments.

For patients, though, the syndromes and disorders are real and life-defining.

Gardner said it was an adjustment to stop thinking of herself as bipolar. "In a way, my sense of who I am is taken away," she said.

Kathy Roux, 43, a peer specialist from Ardmore, has been diagnosed with severe, rapid-cycling bipolar disorder, Asperger's syndrome, borderline personality disorder, obsessive-compulsive disorder, and anxiety.

"I can't work on something unless I know what it is," she said. "I'm not happy that I have the diagnoses, but it's more of a relief because it explains so many things I could never explain."

Weaver, who protested at the APA meeting, said her diagnosis mattered a lot at first. Now, "I've stopped thinking about myself in terms of the DSM and psychiatric diagnoses," she said, "and started thinking of myself more in terms of life."

Mahendra Bhati, a University of Pennsylvania psychiatrist, said "most patients don't know what their diagnosis is." Their doctors don't tell them, he said, and they don't ask.

Psychiatrists can be touchy about the subject. They say doctors in other specialties often don't agree about diagnoses either. That's true. But, unlike other specialties, psychiatry doesn't have blood or imaging tests to confirm diagnoses. There is no psychiatric equivalent of diabetes or a blocked artery.

Psychiatrists have to rely on patient histories. Their patients may be too psychotic, manipulative, forgetful, or high to tell the whole story. Symptoms may change over time. Time can be an issue.

"I can't tell you how many patients tell me the doctor didn't even look up from the prescription pad," Temple's Dubin said.

He recently saw a patient who'd been told he had schizophrenia for 30 years. "The guy's never been schizophrenic," he said. "He's bipolar."

Jefferson's Certa said some of the "softer" diagnoses such as depression and anxiety can blend together, while such things as obsessive-compulsive and eating disorders are more clear-cut.

The line between schizophrenia and bipolar disorder can be tricky. The two were separated a century ago when observers noticed that people with affective or emotional symptoms were more likely to improve. Genetic tests now are finding that the two conditions and autism are related.

Psychiatrists find themselves treating symptoms, knowing science has yet to explain why their patients are suffering.

"We're behind," said Steven Wager, a New York psychiatrist who attended the APA meeting. "It's like epilepsy a hundred years ago."