An ER doctor says he’s sick of seeing monkeypox patients misdiagnosed, only to end up in hospital in excruciating pain

photo of dr  walker with gown and surgical mask on

Dr. Graham Walker, an emergency room physician, treats monkeypox patients in San Francisco.Courtesy of Graham Walker

  • Experts in San Francisco, Miami and the UK say many cases of monkeypox are being “missed”.

  • Some patients are receiving false negative tests for monkeypox, while others are being misdiagnosed.

  • Fear, stigma, miscommunication and misunderstandings all contribute.

More than 7,100 monkeypox patients have been diagnosed in the US since this outbreak began with a single case in mid-May.

But Dr. Graham Walker, an emergency room physician in San Francisco, says many more monkeypox patients aren’t getting the care and attention they deserve to effectively prevent, diagnose and treat this infectious disease.

Walker says he has seen “several patients” whose monkeypox diagnosis was “missed” by another provider before they landed in his ER in excruciating pain.

“I had a patient who, I looked at his record from another facility, and it said, ‘Lesions only on the genitalia, so it’s unlikely to be monkeypox,'” he told Insider.

Other doctors and scientists in the US, UK and West Africa are saying the same thing: monkeypox is being widely underdiagnosed.

Some misdiagnosed patients end up in so much pain they can’t wear clothes

Across the country from the Walker ER, Dr. Lilian Abbo, an infectious disease specialist at the University of Miami, says she has noticed the same problem.

“We’ve seen patients who have gone to seven centers — three different urgent cares, dermatologists and emergency rooms to try to figure out what’s going on,” he said during a recent telebriefing from the Infectious Diseases Society of America, noting the need for better awareness of how monkeypox can present.

Better awareness can have huge implications for both treatment and containment of the disease. It is possible that if close contacts find out early enough in the course of their infection (i.e. within the first 4 days after an exposure), Jynneos smallpox vaccine can be used to prevent monkeypox infection completely.

But “by the time they arrive,” many patients who have been misdiagnosed “may be cured, or some of them may have disease progression,” Abbo said. That progression can be painful.

Patients in this outbreak, in some of the more severe presentations, have been unable to use the bathroom because the pain around the anus and genitalia becomes very intense. “One of my patients said, ‘I can’t even wear pants or underwear without pain,'” Walker said.

“Textbook” descriptions of symptoms are not always accurate

Matt Ford shows monkey pox spots

Matt Ford underestimated the pain of monkeypox.matt ford

Part of the reason monkeypox is being underdiagnosed is that this outbreak of the disease isn’t operating like the “textbook” monkeypox presentations of the past, with classic fever, swollen lymph nodes in the neck and headache that appear before smallpox appears on the face and hands.

Instead, monkeypox lesions may be lodged in the rectum, swollen lymph nodes may be present only in the groin, and it is not unusual for a single pox to be the only marker of a person’s complete infection.

A July 21 New England Journal of Medicine compilation of 528 case reports from 16 countries around the world establishes some clear patterns for this outbreak. Nearly two-thirds of the patients studied had lesions in their anogenital (private) area, and most patients had fewer than 10 lesions on their entire body.

The patients “had symptoms that were not part of the case definitions,” NEJM study author Chloe Orkin told Insider. “The important thing is to help doctors recognize it.”

Fever, fatigue, muscle aches and headaches were some of the most common pre-rash signs of a monkeypox infection, also making it easy for people to initially mistake the condition for COVID.

“Every patient I’ve talked to has had a COVID test when they had a fever and they’re like, ‘oh, it’s not COVID,'” Walker said.

Other times, diagnoses are missed because providers don’t get “good, aggressive cleaning” of the lesions, he said.

“I’ve seen it before, where people have had a test come back negative and I’m like, ‘You have literally all the symptoms of monkeypox, this looks exactly like all the other cases of monkeypox I’m seeing, and We’ve ruled out other things, like herpes, syphilis, whatever.'”

Some people avoid a monkeypox diagnosis because it can be stigmatizing, painful, and lonely.

Early treatment is key to curbing a monkeypox infection and preventing the excruciating pain it causes. The antiviral drug Tecovirimat (TPOXX) can help, as well as prescription pain relievers that are stronger than Motrin and Advil.

But many patients, fearing stigma and lack of information, do not seek help.

One of Walker’s patients had been managing his injuries on his own for a full two weeks, when he finally decided to seek treatment.

“I just wanted to manage it at home. He was worried about the stigma, he said he’s never had an STD before. But the pain was so bad it finally went in,” Walker explained. “There’s a lot of fear, a lot of anxiety, and to be honest, there’s probably a lot of people who haven’t been diagnosed yet,” he added.

Dr. Jason Zucker, an infectious disease specialist at New York-Presbyterian Hospital, said “even patients with mild illness have taken it very hard” when they receive a diagnosis of monkeypox.

“On top of this stigma, patients who are diagnosed are then self-isolating at home for up to four weeks,” he told reporters in a Zoom call on Friday. “It’s important to make sure we’re all aware of this, that we all work together to reduce stigma, and that we offer patients mental health and other support resources after their diagnosis.”

A Nigerian doctor detected this type of monkeypox in 2017. He hopes that people will finally start funding research on this virus.

In Nigeria, where Dr. Dimie Ogoina has been studying sexual contact-related monkeypox outbreaks since 2017, he says he has struggled with similar issues of confusion and stigma, which make it harder to get a sense of the true extent of any outbreak.

Often, he suspects, patients with “genital injuries” don’t go to the hospital for a proper diagnosis, but simply go to the pharmacy for STD treatment.

“There are a lot of things that are still not known about monkeypox” because “it has been a neglected disease,” Ogoina told Insider. “Since the global north now has cases, I’m sure there will be investment in research and we’ll be able to figure out most of these unknowns.”

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