Neurologist Laura Boylan suffered from tremors and loss of balance that she attributed to a cyst in her brain. Why didn’t her doctors believe her?
by David Armstrong Aug. 23, 5 a.m. EDT
ProPublica – Once it was called “hysterical” movement disorder, or simply “hysteria.”
Later it was labeled “psychogenic.”
Now it’s a “functional disorder.”
By any name, it’s one of the most puzzling afflictions — and problematic diagnoses — in medicine.
It often has the same symptoms, like uncontrollable shaking and difficulty walking, that characterize brain diseases like Parkinson’s.
But the condition is caused by stress or trauma and often treated by psychotherapy. And, in a disparity that is drawing increased scrutiny, most of those deemed to suffer from it — as high as 80% in some studies — are women.
Whether someone has Parkinson’s or a functional disorder can be difficult to determine. But the two labels result not only in different treatments but in different perceptions of the patient.
A diagnosis of Parkinson’s is likely to create sympathy, but a functional diagnosis can stigmatize patients and cast doubt on the legitimacy of their illness.
Four in 10 patients do not get better or are actually worse off after receiving such a diagnosis and find themselves in a “therapeutic wasteland,” according to a 2017 review of the literature by academic experts.
“This is the crisis,” said University of Cincinnati neurologist Alberto Espay, the author of guidelines on diagnosing functional movement disorders. “It shouldn’t be stigmatized but it is. No. 1, patients are wondering if it is real. ‘Does my doctor think I am crazy?’ Secondly, doctors can approach it in a way that implies this is a waste of their time.”
A study published last year in a leading neurological journal stoked the growing controversy.
Of patients diagnosed with functional symptoms, 68% were women. This finding, the authors wrote, “suggests that female sex may be an independent risk factor for the development” of functional symptoms. Read more.