by Dr. David S Bell, MD, FAAP*, March 2, 2011:
Amanda Lewis was nearly 40 when I first saw her, and she had been ill with CFS for years. She had all the typical symptoms: unending fatigue, joint and muscle aches, headaches, trouble concentrating.
As her years of illness wore on, she had learned ways to cope with these unpleasant sensations, but there were a whole category of symptoms, which came under the heading of “neurologic,” from which she rarely found relief or escape, nor could she hide them from others.
I was startled when I tapped Amanda’s kneecap tendon. She didn’t kick me - her whole body shook.- In fact, she almost jumped off the table. I then tested her vibratory sense with a tuning fork, the ability of her leg nerves to detect vibration. Her reaction was more muted, but similar to the first response by being exaggerated. It seemed to me as if Amanda was very much like a set mousetrap that was ready to trip given the tiniest nudge. I think this was the first time I was worried about hurting someone by tapping a tendon with a rubber hammer.
• I sent Amanda to a specialist, a neurologist. His diagnosis: Huntington’s chorea, a fatal disease of the central nervous system. Amanda was hardly cheered by the news, and I was dubious because her tremor was unlike the jerking motions of "chorea."
• I arranged for another neurologist to see her in an effort to get a second opinion. The second neurologist suggested that Amanda might have multiple sclerosis, but seemed unwilling to test his own hypothesis by conducting the standard diagnostic tests for the disease.
• A third neurologist insisted that all of Amanda’s symptoms could be ascribed to depression. He prescribed antidepressants.
When I asked him, in a telephone conversation afterward, about Amanda’s remarkable response to tendon tapping, he assured me that her response was phony. Nobody jumps off the table when you tap their reflexes, he noted with a degree of confidence I found chilling.
I realized he was telegraphing to me some basic information he believed I needed to know: Amanda was a fruitcake. Amanda’s exaggerated reflex response became “the fruitcake factor.”
Neurologic symptoms appear to me to be the most direct window into the heart of this illness; they both define and explain CFS.
The reluctance of neurologists to be interested in CFS mystifies me. Perhaps it is too difficult; ... Read more>>