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

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

• Fear, stigma, miscommunication and misunderstanding 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 physician in San Francisco, says that many more monkeypox patients are not being given the care and attention they deserve to prevent, diagnose, and treat this infectious disease efficiently.

Walker says he’s 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 saw their record from another facility, and it said, ‘lesions only in the genitals, so unlikely to be monkeypox,'” he told Insider.

Other clinicians and scientists in the US, the UK, and West Africa say the same: monkeypox is being widely underdiagnosed.

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

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

“We have seen patients that have been going up to seven centers: three different urgent cares, dermatologists, and ERs to try to figure out what is going on,” she said during a recent Infectious Diseases Society of America telebriefing, stressing the need for better awareness of how monkeypox can present.

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

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

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

‘Textbook’ descriptions of symptoms aren’t always accurate

Part of the reason why monkeypox is being underdiagnosed is that this disease outbreak isn’t operating like the “textbook” monkeypox presentations of the past, with a classical fever, swollen lymph nodes in the neck, and headache all appearing before pox surface on the face and on the hands.

Instead, monkeypox lesions may be lodged in the rectum, lymph node swelling may be present only in the groin, and it’s not unusual for a single pock to be the only marker of a person’s entire 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, with a majority of patients counting less than 10 lesions on their entire body.

Patients were “presenting with symptoms that weren’t part of the case definitions,” NEJM study author Chloe Orkin told Insider. “The important thing is to help doctors to recognize it.”

Fever, fatigue, muscle aches and headaches were some of the most common pre-rash signs a monkeypox infection was budding, which also makes it easy for people to confuse the condition with COVID, initially.

“Every single patient I’ve talked to has done 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 a “good, aggressive scrub” of the lesions, he said.

“I’ve seen that before, where people have had a test that came back negative and I’m like, ‘you have literally every symptom of monkeypox, this looks exactly like all the other monkeypox cases I’m seeing, and we’ve ruled out other stuff, like herpes, syphilis, whatever.'”

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

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

But many patients, fearing stigma and lacking information, are not seeking help.

One of Walker’s patients had been managing his lesions alone for two full weeks, when he finally decided to seek treatment.

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

Dr. Jason Zucker, an infectious disease specialist at New York Presbyterian hospital, said “even patients with mild disease have been taking it very hard” when they receive a monkeypox diagnosis.

“In addition to this stigma, patients who are diagnosed then isolate at home for up to four weeks alone,” he told journalists on a Zoom call Friday. “It’s important to make sure that we’re all cognizant of this, that we all work together to reduce stigma, and that we offer patients mental health and other supportive resources after their diagnosis.”

A Nigerian doctor spotted this kind of monkeypox in 2017. He hopes people will finally start funding research on this virus.

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

Often, he suspects, patients with “genital lesions” aren’t coming to the hospital to be properly diagnosed, instead, they’re just going to the pharmacy for STD treatment.

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

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