He was too weak to even get out of the bed to go to the bathroom. What could be causing this devastating illness?
To the 33-year-old man, the workday seemed to stretch on forever. He had felt bad for a couple of days at that point but just wanted to push through because he and his girlfriend would get to spend the next day — Christmas — and most of the following week with his mother, his sister and her baby. It would be his first vacation since SARS CoV-2 pushed the Hackensack University Medical Center, where he worked, into overdrive. When his shift finally ended, rather than go straight home, he took a detour through the emergency department. He tested negative for Covid recently, but feeling this sick, he wanted to get checked out before he saw his family.
Dr. Nava Bak was the emergency-medicine doctor on duty that evening. The E.R. resident told her about the hospital employee who had come in after work complaining of a high fever and severe abdominal pain for the past two days. He had some diarrhea and a little nausea. He definitely looked as if he was in a lot of pain, the doctor in training acknowledged, and his belly was tender when she examined him, but she still wasn’t sure what he had. He said the symptoms started after eating some fast food earlier in the week. And his white-blood-cell count was elevated — so maybe it was some kind of gastrointestinal bug. But that usually comes with lots of vomiting, and he hadn’t had any. And though he described himself as healthy, he’d been sick recently. Six weeks earlier, he and his girlfriend both got Covid. It wasn’t that bad — a little diarrhea and shortness of breath — and he went back to work as soon as he was cleared.
And then 10 days ago he came to the E.R. because he started drooling out of the left side of his mouth. He was drinking an iced tea and felt something cold on his shirt. The drink had come right out, and he hadn’t even felt it until the icy liquid hit his chest. In the mirror he could see that one side of his mouth was sagging. A friend at work made him go to the E.R. just in case he was having a stroke. The doctors who saw him then said it was Bell’s palsy — a temporary paralysis of the nerve that powers the muscles of the face. It was usually triggered by a viral infection, they told him, so he was treated with steroids and an antiviral, and everything got better.
The patient was lying flat when Bak entered the small examining room. The first thing she noticed was that he was clearly in a lot of pain. His face was flushed and shiny with a thin film of sweat. She introduced herself and asked the question she often asked patients who presented with a lot of different symptoms: “What’s bothering you the most right now?” His belly, he told her. This was a pain that he’d never had in his life. It started up in his chest but over the past couple of hours moved to his lower right side. And he had a terrible headache. On exam, he was sore no matter where on his abdomen she pressed, though it may have been worse on the right. Abdominal pain and fever — most of the time that’s going to be appendicitis or maybe diverticulitis. The headache was odd, though. And the diarrhea.
Whatever he had, Bak decided, it seemed to be in his gut. She ordered a CT scan, which showed swollen lymph nodes in his abdomen and chest. And both his liver and his spleen were enlarged. It was probably an infection, but where? His illness still didn’t fit any pattern that Bak recognized. She started the patient on broad-spectrum antibiotics — she didn’t feel comfortable withholding treatment from a man this sick — and admitted him to the hospital.
A Pattern Slowly Takes Shape
Bak continued to follow the patient over the next few days. She often kept track of puzzling cases just to find out what they had. But so far this patient remained a mystery. He continued to spike high fevers. And he had sweats that soaked through his pajamas and sheets. He developed strange muscle twitches in his face. He was too weak to even get out of the bed to go to the bathroom. What could be causing this devastating illness?
A couple of days in, he started to get worse, despite the antibiotics. His red-blood-cell count fell. His liver labs began to rise. His heart wasn’t beating well, and his blood pressure began to drop. Covid infections can predispose a patient to form unnatural clots, even after the disease has run its course. The scan they ordered didn’t show any clots but did reveal that the enlarged lymph nodes in his chest and abdomen were even larger. Was this lymphoma — a cancer of the lymph system? Oncologists joined the infectious-disease doctors, the gastroenterologists and the rheumatologists in their efforts to figure out the diagnosis.
As Bak watched this man’s symptoms develop and his inflammatory markers begin to rise, she finally started to see a pattern take shape. Her four children were in school in Paramus, N.J., and she headed a group of parent volunteers who advised the school on issues concerning the Covid-19 epidemic. If this patient had been a child, Bak was certain, his pediatrician would be starting to wonder about a disorder called Multisystem Inflammatory Syndrome in children, or MIS-C, a rare disorder involving widespread inflammation that is seen in some children after recovering from Covid. It was something she had heard about and read about but never actually seen. Not in children, and certainly not in adults.
MIS was first described in May 2020 in a letter published in the British journal The Lancet. A group of pediatricians described eight children, most of whom had some documented exposure to Covid-19, who came to a London hospital with unrelenting fevers, abdominal pain and diarrhea. Their blood pressures were extremely low, and testing showed that their hearts were not working well. The doctors caring for these patients postulated that this was an immune-system overreaction, triggered by infection with the coronavirus. Just a couple of weeks later, The Washington Post reported several cases of young adults who were hospitalized with a similar illness, eventually called MIS-A. Although it remains unclear how even a mild infection with SARS CoV-2 might cause this life-threatening disorder, treatment with steroids, a class of drugs that suppresses the immune system, has been shown to help.
An Adult With a Children’s Syndrome?
Before suggesting this rare diagnosis, Bak reached out to a colleague, Dr. Bindu Balani, an infectious-disease specialist at the hospital. “I admitted a patient ... and find his case very intriguing, so I’ve been following up. I am wondering if he may have MIS-C,” she wrote. “Curious what you think.” Balani, who was on vacation with her family, didn’t have immediate access to a computer and texted back, “He is a 33 yr old!” Still, she was curious and found a computer later that day to read up on the patient. His presentation was totally consistent with MIS. And she knew the syndrome had been seen in adults. She called her colleague who was assigned to the patient’s case and proposed the diagnosis, explaining that the E.R. doctor had suggested it to her.
MIS in either children or adults can be diagnosed only when infection has been ruled out. In this patient’s case, he was on antibiotics for days without improvement, and none of the tests sent to look for other types of infection had been positive. The possibility of MIS-A was discussed with all the specialists involved, and the following day the patient was started on high-dose steroids.
The response was immediate. Within 24 hours both the fever and the diarrhea were gone. He was able to get out of bed and walk around. He was hungry — something he hadn’t felt in over a week. He was discharged from the hospital a few days later.
Recovery was tough — both physically and mentally. It took weeks before he started to feel himself again, and even now, 10 months later, he still feels out of breath when he hurries. But even worse are the scars left on his sense of who he is. He described himself to me as a “textbook tough guy.” And he took care of himself — not a smoker, never used drugs, rarely drank. He tried to eat healthy foods and stayed physically active. Despite all that, he came close to dying. And though his rational mind understood what happened, there was part of him that was still afraid — frightened it happened in the first place, and terrified it could happen again.
Lisa Sanders, M.D., is a contributing writer for the magazine. Her latest book is “Diagnosis: Solving the Most Baffling Medical Mysteries.” If you have a solved case to share, write her at Lisa.Sandersmd@gmail.com.
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