They told her it was ‘all in her head’ – but in truth – it was a degenerative disease

Has it ever happened that someone has had a serious disease and doctors refused to see it? Such an example is provided in the book The Man Who Grew Two Breasts And Other True Tales Of Medical Detection by Berton Roueche.

His tale starts a little past five o’clock on the afternoon of October 11, 1978, when a young black woman came into the emergency room of Alvarado Community Hospital in San Diego, and asked to be admitted for psychiatric help. Her name was Sheila Allen. On October 16 a member of the psychiatric staff named Robert Brewer went in to see her. She looked and acted very weak. He was inclined to categorize her problem as psychiatric, but he started thinking of multiple sclerosis. Then he asked her what she thought was wrong with her. She said "I’m a kook". Brewer replied that this might be so, but she should see a neurologist. She said she did not want to see one, she had seen dozens, and her problem was that she was a kook.

She told Brewer that she had been getting sicker and sicker for four years. In the March of 1974, she was out dancing one night and her legs gave out. She fell. She ascribed the fall to high heels, and went to lower heels and then one night it happened again. Then she developed more symptoms. In her job as a flight attendant, she would lift trays, and her arms would begin to tremble. Even a coffee pot was almost too much. She got tireder and tireder, and sleep did not help. She went to a doctor. The doctor said to take it easy, and prescribed Valium. She had to give up her job.

"I was getting weaker every day. Everything I did hurt. It hurt to comb my hair. My arms were so heavy and weak…I dont know how many times my legs gave out and I fell down the stairs."

So she went to a psychiatrist. He was convinced that her trouble was psychosomatic. He gave her a drawer full of prescriptions – Valium, Elavil, etc. Every doctor she went to see prescribed something. Then she went to another psychiatrist. He also told her that her problem was psychosomatic. Her own family told her that she was crazy. Finally she fell down the stairs again and her mother took her to a hospital. Here a young doctor looked at her, and said "I would think you might have myasthenia gravis, but the symptoms aren’t right. Myasthenia gravis starts with the eyes and face, with drooping eyelids, and trouble swallowing. You don’t have that." He said she should see a psychiatrist.

Her symptoms only got worse, and she visited psychiatrists and psychologists who all agreed that her trouble was psychosomatic.

She decided her only hope was to get hospitalized. In the hospital she met Dr. Brewer, who had her see his colleague, a neurologist named Dr. Fred Baughman. Baughman finally figured out what the trouble was. It was an atypical case of Myasthenia Gravis. When later interviewed about this case, Dr. Baughman quoted a saying about diagnosis "When you hear hoofbeats, you don’t necessarily think of a zebra." By looking at her he saw that she suffered from genuine muscle weakness, nothing psychiatric about it. Dr. Baughman had studied at Mt. Sinai hospital in N.Y. where he developed an interest in this fairly uncommon disease. Myasthenia Gravis is an autoimmune disease. The victim’s own antibodies interfere with the transmission of impulses from the neurons to the muscles. Dr. Baughman realized that the textbook picture of the case, drooping eyelids and all, need not be present.

So Dr. Baughman gave Sheila a medicine that increased transmission at the neuromuscular junction, and her strength came back suddenly, though only temporarily, until he gave her better drugs and other treatments.

Why did many professionals, doctors, neurologists, psychiatrists, and psychologists looking at a patient with dramatically severe symptoms of muscle weakness universally conclude her problem was a psychological one? Because they had a script to refer to when all else failed, the mental illness script. I have come across several examples of this nature, where when doctors fail to explain a set of symptoms, they relegate it to the realm of the psychiatric. In one example, a woman was literally slowly starving to death over the years, and was diagnosed as an “anorexic” when her problem was gastrointestinal. If she had not met the right doctor at the last moment, she probably would have died, and been classified as just another tragedy of an anorexic who would not respond to therapy.

In Follies and Fallacies in Medicine, Prof. Petr Skrabanek and
Dr. James McCormick talk about this as well. "…in the present state
of our ignorance diagnosis (of mental illness) depends upon symptoms and
behavior rather than on any objective test."

They also quote B. Martin, who compiled a list of strategies used by scientists when faced with data that do not fit their preconceived theories.

1. flat denial

2. skepticism about the source of the item

3. ascription of an ulterior motive to the source

4. isolation of the item from its context

5. minimalization of the importance of the item

6. interpretation of the item to suit one’s purpose

7. misunderstanding of the item

8. thinking away or just forgetting the item.

Of course these strategies are also used in other realms besides medicine.

Actually in medicine, the incentive is to err on the side of caution, as the authors point out, and make a diagnosis of a "nondisease", rather than miss the diagnosis of a disease that is actually present.

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