The hypochondriac doctor
As a doctor, Mert Erogul had often treated patients whose ailments were either imagined or psychosomatic. But when he began to suffer from numbness and weakness in his limbs, the problem felt entirely real – and terrifying.
In the summer of my 44th year, when everyone did the ice bucket challenge for ALS (or motor neurone disease), I did not participate. I took note of these Facebook activities, but I was never tagged by my friends to participate. I thought about doing the ice bucket challenge on my own, but I got caught up in the specific detail of whether a middle-aged man should have his shirt on or off during an internet display of virtue. And so nothing happened.
Some time after that, in the autumn, I began to notice a hitch in my left leg when I walked or stood for too long. The knee would give out periodically. My leg was otherwise normal, it was strong, it didn’t hurt. I’m a doctor and so I looked at it. It looked fine. At the time my toddler son demanded to be carried everywhere, and I was riding my bike to work every day. Maybe, I thought, I was extending myself too far. A month or so after that, I started to have some numbness and an ache in my left arm. Probably a pinched nerve, I thought, and did what most doctors do for medical problems, which is to take some ibuprofen. Soon after that, while I was giving a lecture to medical students, the microphone slipped from my hand and fell to the ground. Medically speaking, dropping things is a big deal. I realised that something was happening, something troubling that I couldn’t ignore any more.
Things had been going well enough for me. I was married with two young children and I liked the work I was doing. If I was stressed and sleepless and maybe a bit overwhelmed by new fatherhood, it was still a very happy time. I was working in an emergency department and teaching a course to medical students about the soft skills of being a doctor: how to talk to patients, how to understand their experience, how to make sick people feel better. It had occurred to me that to be a healthy person teaching students about illness might be a provocation of fate.
I ended up in a neurologist’s office the next week sitting on an examination table in a hospital gown. Dr K came in and introduced herself. She was warm and attentive. I felt selfconscious in the gown, powerless, vulnerable, all those things I teach medical students. As I told Dr K my symptoms, I watched her expression carefully. She nodded and said it could be a disc, as I had suspected. “But as you know,” she said, “any space-occupying lesion in the spine or brain can also cause these symptoms.” This was a way of saying “tumour” without using the word. “And we also have to consider things like MS. Or ALS,” she said, and then she looked away for a moment before glancing back to register my reaction, which was a welling sense of foreboding, of tumbling, of skidding down an embankment. Her office scheduled an MRI for me later in the week.
I was working in the emergency department the evening after my MRI, seeing patients with the desperate complicity of a dying man tending to other dying men. Intermittently I would look up the dismal survival statistics of various spinal and intracranial tumours and then go back to my sad work. When Dr K’s number flashed on my phone, I excused myself from patient care mid-sentence and walked out to the waiting room where I could get better reception. She had looked over the studies and spoken with the radiologist. Everything was normal. I did a fist pump as patients in the waiting room looked on. It was the elation of the near-death experience, of return to life!
When I saw my neurologist the next week for the victory-lap celebration she said: “Well, I guess we should get that EMG now.” Oh right. The MRI had only ruled out a tumour. I had forgotten about ALS. An EMG, or electromyogram, is a test used to diagnose motor neurone diseases. ALS destroys the neurons controlling muscle movement, leading to complete loss of strength and the ability to control one’s limbs and trunk and face, and finally the muscles of breathing. The cause is unknown, there is no cure, there is no decent treatment and it is usually fatal within a few years. Perhaps most awful is that, in many cases, as victims are progressively disabled, unable to speak or swallow or move, their cognition is maintained. They must endure the burden of progressive disability and then the dying process as mute witnesses, without the grace of dementia that marks most other deaths. In any hierarchy of terrible diseases, ALS ranks near the very top.
Dr K referred me to see Dr M, an ALS specialist with a strong Irish brogue and a warm and disarming manner. I explained my worries about ALS and told him why Dr K had sent me and he seemed unimpressed. “You’re not that interesting,” he said to me. His dismissiveness was reassuring, but I imagined this was part of his routine to put me at ease. Dr M and I talked politics while he put small needles into my leg for the EMG test. Afterwards, in his office, I scanned the diplomas and photos on the walls while he typed. Then he looked up and said: “There’s nothing wrong with you. The test was completely normal.” Are you sure, I asked? Yeah, he said, brusquely. Do you have any more questions? I didn’t. I thanked him, this magnificent man, and stood up and walked out of the building and onto the street of the wonderful living city. I called my wife to tell her the good news and on the way home I smiled at all the New Yorkers in the subway.
In the week that followed, I woke up early and happily performed all the mundane tasks of my life. I went cheerfully to work. But physically, I didn’t feel back to normal. My symptoms hadn’t improved. In time, I returned to the internet in an effort to understand what might be happening. I knew that people make
“The microphone slipped from my hand and fell to the floor. Medically speaking, dropping things is a big deal”
mistakes in medicine, and wondered if he could have missed something. You can find whatever opinion you want on the internet, and I did. A woman on a discussion board related the story of her husband, who was convinced something was wrong: he was feeling weaker and weaker, but his EMG was normal. Six months later he had another EMG and their suspicions were finally confirmed – he had ALS. Of course, the EMG, like any test, is operator-dependent and potentially fallible.
By the middle of February, I had started to get muscle twitches, another of the cardinal features of ALS. They started in my hand. A muscle would begin twitching for a few minutes and then stop. And then it might start somewhere else. Sometimes two muscles would be twitching at once. They would start without warning, tic tic tic, like someone tapping me on the shoulder to remind me I was going to die. Then would come a wave of fear, drawing back a curtain to reveal the mortal reality that I had successfully hidden from myself. Leaving my children without a father was the worst of it. In my dreams they wandered through empty streets calling for me. I thought of Michael Keaton in My Life, making home movies to leave something behind for his newborn. I thought I should do this too, with my iphone. But what to say to a fouryear-old? And how might I devise a system to deliver the content at set intervals? In the medical school, I was tasked with writing the death and dying curriculum for first-year students. It was a cruel coincidence, as ALS is the exemplary case typically used to teach issues around death and dying. My research required reading cases of patients grappling with weighty decisions as they died slowly, their spouses wringing their hands.
One week, on two separate occasions at the hospital cafeteria, my bill came to $6.66. The cashier looked at me warily and my rational mind decided to take a break. I started doing everything in sevens as I had read that seven is a lucky number. Seven brushes of the teeth, seven chews of the burger. One night after a few drinks, I donated $777.77 to the ALS foundation. At a friend’s festive dinner, I was seated across from a woman from Shanghai. We talked about superstition and my fixation on the number seven. She laughed and said seven is a very unlucky number in Chinese mythology, a number associated with death. I felt like throwing up. I couldn’t even manage a smile.
By the spring I had lost 5kg. My left arm and leg felt like jelly most of the time and fasciculations travelled over my body throughout the day. My wife was supportive, but also gently pointed out the possibility that this whole thing could be all in my mind. Was there any objective evidence that I had the disease? Did I have any objective weakness? The answer was no and no. I carried my kids up the stairs, I could do 50 push-ups. She convinced me to get out of my psychic echo chamber, and to go back to the neurologist.
A week later, I sat in the examining room again, dressed in the insubstantial paper gown waiting for Dr K. When she entered the room and asked how I was, I became overcome with emotion. I said that I didn’t like the direction things were going and I was afraid I would have to make some serious choices soon. She looked at me quizzically and then when she got the point of what I was saying, she told me I should see a psychiatrist. “That’s all right,” I said, taking a deep breath. “I’m coping all right. I’m certainly not going to take any antidepressant. I’ve been…” She held up a hand to stop me. It was her opinion, she said, that my symptoms were not an organic illness. They were an expression of some inner psychic distress. I blinked. This was welcome news, yes it was. In my own clinical practice, I often believe this of patients, and on rare occasions I’ve suggested it directly to them, but it’s a tricky business. Many patients would take it as an insult. I, on the other hand, was delighted by the possibility.
To rule out ALS for good, she referred me to a renowned specialist, Dr HM at Columbia. A small, neatly dressed Japanese man, Dr HM emanated a kindly paternal presence and immediately commanded my trust. He took out a single sheet of paper and a pen and asked me to tell him my story. As I talked, he politely interjected questions, all the while writing on that single sheet. When I was done, he looked up with raised eyebrows and said: “Is that all?” I felt embarrassed and had the urge to make something up. But if he was unimpressed, this was a good sign. Then he led me to the table and did a thorough examination. Everything about him was careful and measured and calming and I took note for my own practice – should I survive this ordeal.
After the examination, I sat across from him as he scribbled notes in his deliberate way. He looked up and took off his glasses and said: “You’ve been to two doctors now who told you that you don’t have ALS. So it will be hard for me to convince you that you don’t have it, but I will tell you that I have seen many patients with isolated fasciculations without any muscle weakness or objective signs and none of them have developed ALS.” He paused. “None of them.” I nodded. “In fact,” he continued, “I myself have had fasciculations for 20 years. I’ve thought I had ALS many times, but I have never developed it either,” he said grinning. This self-disclosure was an unexpected gift. I nodded, and let the generosity of this great and learned man fill me up like oxygen. “So I don’t have ALS?” I asked. “I really don’t think so,” he managed. I stopped nodding. And as if reading my mind, he suggested that I should get one more EMG, and that if that were normal, then I should forget about ALS.
I did get that second EMG from Dr M and it was normal. I told Dr M that I had developed a profound admiration for the people who were working to find a cure for ALS. I had donated money to the organisation, I had liked it on my Facebook page, I had considered going to some of their events. He shook his head and said that I should just forget about ALS. “Erase it from your memory and from your life,” he said.
My symptoms are essentially gone now, though occasionally I feel something in my leg that will remind me of that dark time. In my memory, I was circled by a shark that ultimately lost interest and swam away. In the spring I decided to change jobs after 15 years at the same place. I took a long break. I started to lift weights. Some turning point occurred that I still don’t have the perspective to understand. I was initiated, as people my age often are, into an awareness of the fragility of our being. I realise that my adventure was a rehearsal for something else, the reality behind the curtain of youth that older people politely keep to themselves.
A longer version of this article first appeared in The Guardian. © Guardian News & Media Ltd.
“The twitches would start without warning, tic tic tic, like someone tapping me on the shoulder to remind me I was going to die”