If the Best You Can Do Is Zero

Leon Fleisher is one of the great pianists of our generation, but 30 years ago—at the height of his career—he was struck by a baffling illness that afflicted his right hand and drastically impeded his playing career. According to Fleisher’s biography, the fingers of his hand weakened and became painful and numb, and they would curl uncontrollably. Exercise was of no avail and, indeed, seemed to worsen the condition. Fleisher sought the help of the best experts. Despite numerous workups, doctors could not make a diagnosis with confidence, meaning the treatments that Fleisher tried were—at best—empiric and—at worst—desperate, including dousing the hand with a bottle of whiskey.

A rheumatologist may have been one of the physicians who saw Fleisher, and I suspect that he would have diagnosed a repetitive strain injury or carpal tunnel syndrome. Had I been consulted, I might have added reflex sympathetic dystrophy (RSD) or complex regional pain syndrome type 1. RSD is one of those baffling conditions that rheumatologists see.

Certainly from my own experience, I am never sure that I am correct when I make that diagnosis. I think that when all of the signs and symptoms of RSD are present (the pain, the autonomic dysfunction, the washout of the bones by X-ray) I can be in the ballpark. Even a first-year medical student can make the diagnosis when a claw deformity is present. But in the early stage of the condition or the less classical cases, I usually feel in terra incognito when I put down RSD as a diagnosis.

Turn Losses to Gains

Without a diagnosis and with no improvement, Fleisher had to change his life. Fortunately for him, there is a repertoire of pieces for the left hand that allowed him to perform despite an otherwise great impairment. Fleisher’s condition was ultimately diagnosed as focal dystonia and, with a variety of treatments, he regained the use of his right hand and has continued performing. He is now almost 80.

While a rheumatologist or any other physician may be stymied by diagnosing and treating a condition like Fleisher’s, we nevertheless have a large armamentarium of measures that could define his disability using metrics that range from the SF-36 to my favorite, the Health Assessment Questionnaire (HAQ). The HAQ is a catalog of woe and provides a remarkably accurate assessment of loss through questions that probe the functioning of the upper and lower extremities.