In This Corner
My Brush with Lou Gehrig’s Ghost
Some unfamiliar sensations led this doctor to start worrying—and have more empathy for his patients
My Brush with Lou Gehrig’s Ghost
Some unfamiliar sensations led this doctor to start worrying—and have more empathy for his patients
By Ronald Pies
“Being a physician in these circumstances proved a mixed blessing,” says Ronald Pies. Photo: Yoon S. Byun
The muscle twitches began insidiously, about a week after my wife and I had arrived at our summer home: brief, minute spasms in my arms, hands and thighs. Doctors call these localized, involuntary contractions fasciculations—usually nothing to worry about, and often due to caffeine, exertion or stress.
But I’m a longtime coffee drinker, rarely break a sweat, and, as a doctor, have been through hellacious stress without as much as a hiccup. With a cold, sinking feeling in my stomach, I recalled that fasciculations can be seen in the rare, progressive neurodegenerative disease Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s disease, after the baseball legend who succumbed to it at age 38.
There is no denying that ALS is a terrible illness, and a diagnosis all physicians dread giving to a patient. True, some remarkable long-term survivors of ALS, like cosmologist Stephen Hawking, belie the notion that ALS is always fatal. Still, the average survival time is just three to five years.
ALS attacks nerve cells in the brain and spinal cord that activate muscles. Although one’s mental faculties usually remain intact, ALS eventually destroys most voluntary muscle function. According to the ALS Association, the disease usually appears between ages 40 and 70, with an average age of about 55—and, yes, I fit the bill.
Being a physician in these circumstances proved a mixed blessing. On the one hand, I had the medical knowledge base that let me step outside myself and examine my symptoms with a modicum of objectivity. On the other hand, that same medical knowledge left me painfully aware of what lay down the road, if indeed, I had ALS.
And even as my “inner physician” calmly pointed out that I hadn’t experienced any muscle weakness or noticed any wasting, my mortal fears spoke to me in their own quavering voice, reminding me of those isolated incidents over the past year, in which I had tripped or lost my balance. Hmmm. . . . early ALS?
Not surprisingly, my rising anxiety seemed to worsen the fasciculations. Never again will I think, “Oh, come off it, already!” when a patient starts obsessing over that funny, growling sound in his stomach.
Slowly, I began to get a grip and started piecing together the subtle changes in my life and surroundings since moving to my summer place. For one thing, I was using a different type of exercise treadmill—one that put more pressure on my lower back, made my legs work harder and hyper-extended my wrists. Also, my new computer work station was uncomfortable, leaving my neck achy and my hands and fingers tingling slightly. Finally, I had been taking several tablets a day of a caffeine-like decongestant, phenylephrine, for some bad sinus congestion.
The adage “a lawyer who defends himself has a fool for a client” could easily be tweaked into a maxim about physicians who diagnose themselves. I thought about seeing a neurologist, but given the brevity of my symptoms and the lack of muscle weakness, I decided to test a hypothesis.
I cut back on the treadmill, repositioned my computer monitor, plopped a cushion down on my chair and weaned myself off the decongestant. After a few days, the muscle twitching abated dramatically—highly atypical in ALS—and an afternoon of vigorous hiking persuaded me I was probably OK.
About two months later, back at our regular home in Massachusetts, the fasciculations were occurring only rarely, usually right after a period of vigorous exercise. Still, I decided to play it safe and sought out a neurological evaluation. After listening to my story carefully, and conducting a standard neurological exam, the neurologist spoke the words I had been longing to hear: “I think your condition is very consistent with benign fasciculations. I’m not recommending any further tests.”
My brush with Lou Gehrig’s ghost had apparently been a visitation of my own making, and I would advise anyone with similar symptoms to see their doctor sooner rather than later.
Yet the experience left me with a strange and no doubt unmerited bond with ALS sufferers. I also came away from my experience with a keen appreciation for the unfathomable courage shown by those actually facing down this illness. A contribution to the ALS Association seemed the least I could do. Lou Gehrig would doubtless remind us that much more must be done.
This article first appeared in the Winter 2010 issue of Tufts Medicine magazine.
Ronald Pies is a clinical professor of psychiatry at Tufts School of Medicine and the author of Everything Has Two Handles: The Stoic’s Guide to the Art of Living (Hamilton Books, 2008). He lives in the Boston area.
