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Treating Amyotrophic Lateral Sclerosis Without an Advocate

Flannery, Michael MD

doi: 10.1097/ACM.0b013e318275e6c5
Teaching and Learning Moments

Dr. Flannery is professor, Department of Internal Medicine, University of South Florida Health Morsani College of Medicine, Tampa, Florida; e-mail:

I had been the program director of our internal medicine residency program for eight years when it came time to tell my residents, students, and staff that I had the symptoms and signs of amyotrophic lateral sclerosis (ALS). While my neurologic symptoms were promising, my pulmonary symptoms and pain were progressively worsening. Having only taken care of a few patients with ALS, I didn’t know much about the disease, other than the few general symptoms and signs that I’d taught our residents preparing for board certification each year. Like many ALS patients, I already was on a number of medications added by one specialist after another. Like many generalists in academic medicine, I was my own primary care physician, and I felt very much alone. This feeling, in addition to my severe pain, made me consider desperate, suicidal thoughts, but as a husband and father of three, suicide was not an option.

Given my pain level, my pain specialist recommended an intrathecal catheter. By then, I wasn’t thinking for myself or being proactive. How, why, and where did not matter to me. I simply wanted relief from the pain. For the first 12 hours, I felt fantastic, then came complete urinary retention. The focused pain fellow who saw me didn’t know how to treat urinary retention. How could an advanced fellow not know how to treat such a common problem? Despite my amazement, I felt good as I recommended to him the appropriate orders. Afterward, though, I suffered opioid withdrawal when the team stopped all my medications, and cerebrospinal fluid leak syndrome developed when they removed my catheter. Again, I felt alone as the pain team announced that my symptoms simply would pass in a few days. It took me until that point to realize that I was missing an advocate, someone to help me make the tough decisions and avoid such complications.

I wasn’t in control, and, even in my hazy state, I knew that what was happening was wrong. And it scared me. Soon after discharge, I started out at our primary teaching facility, where I immediately felt comfortable even before my treatment began. If you ask an academic physician who his or her primary care physician is, you’ll get a stare and no answer. I used to be one of those physicians. What I had was a list of specialists. But I had no one to truly look at the whole picture. My new advocate not only treats my problems, both physical and emotional, but also discovered additional, easy-to-treat problems. Within days of starting treatment for those problems, I felt even better. I learned a lesson that I had repeatedly taught at our morning reports—Patients, especially those with a myriad of specialists, need a primary care physician to manage, advocate, and care for them under any conditions, simple or complex.

© 2013 Association of American Medical Colleges