- Experts in San Francisco, Miami and the UK say many cases of monkeypox are being “missed”.
- Some patients are getting false-negative tests for monkeypox, and others are being misdiagnosed.
- Fear, stigma, miscommunication and misunderstanding are all contributing factors.
Since the outbreak began in mid-May, more than 7,100 cases of monkeypox have been reported in the United States.
But Dr. According to Graham Walker, an emergency physician in San Francisco, many more patients with monkeypox are not receiving the proper care and attention to prevent, diagnose and effectively treat this contagious disease.
Walker said he’s seen “several patients” whose diagnosis of monkeypox was “missed” by another provider before they ended up in the ER with excruciating pain.
“I had a patient, and I saw their record at another facility, and it said, ‘Only genital lesions, so it can’t be monkeypox,'” he told Insider.
Other clinicians and scientists in the US, UK and West Africa say the same thing: monkeypox is widely underdiagnosed.
Some misdiagnosed patients have trouble getting dressed
From Walker’s ER across the country, Dr. Lillian Abbo, an infectious disease specialist at the University of Miami, says she’s seen the same problem.
“We’ve seen patients go to seven centers: three different emergency rooms, dermatologists and the ER trying to figure out what’s going on,” he said at a recent Infectious Diseases Society of America telebriefing. Learn more about how monkeypox occurs.
Better information can have major implications for both treatment and disease prevention. It is possible that Jynneos smallpox vaccine can be used to completely prevent monkeypox infection if close people are aware of the course of the infection early (that is, within the first 4 days after exposure).
But “by the time they arrive,” many of the misdiagnosed patients “may have recovered or some of them may have progressed,” Abbo said. This progress can be painful.
Patients affected by this outbreak, in some of the most severe cases, are unable to go to the bathroom because the pain around their anus and genitals becomes so severe. “One of my patients said, ‘I can’t put on pants or underwear without pain,'” Walker said.
“Textbook” descriptions of symptoms are not always accurate
One reason monkeypox is underdiagnosed is that epidemics of the disease do not behave like the “textbook” presentations of monkeypox in the past, with classic fever, swollen neck lymph nodes, and headache preceding smallpox. face and hands.
Instead, monkeypox may be localized to the rectum, swollen lymph nodes may be confined to the small intestine, and it is not unusual for a single pouch to be the only symptom of an entire infection in a person.
On July 21, the New England Journal of Medicine collected 528 case reports from 16 countries around the world and identified some clear patterns for this epidemic. Almost two-thirds of the patients studied had lesions in the anogenital (private) area, and the majority of patients had fewer than 10 lesions on the entire body.
The patients “presented symptoms that were not within the case definitions,” NEJM study author Chloe Orkin told Insider. “The most important thing is to help doctors recognize it.”
Fever, fatigue, muscle aches and headaches have been among the most common symptoms of monkeypox outbreaks, making it easy for people to confuse the condition with COVID.
“Every patient I’ve talked to has been tested for COVID when they have a fever and they say, ‘Oh, it’s not COVID,'” Walker said.
Other times, diagnoses are missed because providers don’t get a “good, aggressive scrub” of the affected, he said.
“I’ve seen people test before and it’s negative, and I say, ‘You have all the symptoms of monkeypox, it’s similar to other cases of monkeypox that I’ve seen and we’ve ruled out other things like herpes, syphilis.'”
Some people avoid being diagnosed with epilepsy because it can be stigmatizing, painful and lonely.
Early treatment is key to curbing monkeypox infection and preventing the excruciating pain it causes. The antiviral drug Tecovirimat (TPOXX) can help, as do pain relievers stronger than Motrin and Advil.
However, many patients do not seek help due to fear of stigma and lack of information.
One of Walker’s patients managed her wounds alone for two weeks before finally deciding to seek treatment.
“She just wanted to manage it at home. She was worried about the stigma, she said she’d never had an STD before. But the pain was so bad that she finally got it,” Walker explained. “There’s a lot of fear, there’s a lot of anxiety, and frankly, 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 that when he was diagnosed with monkeypox, “even patients with mild disease took it seriously.”
“In addition to this stigma, diagnosed patients are left alone at home until four,” he told reporters in a Zoom call. “It’s important to make sure we all understand this, work together to reduce stigma, and offer mental health and other supportive resources to patients once they’re diagnosed.”
A Nigerian doctor discovered monkeypox in 2017. He hopes people will eventually start funding research into this virus.
In Nigeria, where Dr. Dimi Ogoyna has been researching outbreaks of sexually transmitted monkeys since 2017, and she says she has struggled with issues like confusion and stigma, both of which make it difficult to understand the true scale of any epidemic.
Often, he suspects, patients with “genital lesions” go to the pharmacy for STD treatment instead of coming to the hospital for proper diagnosis.
“There’s still a lot we don’t know about monkeypox” because “it’s a neglected disease,” Ogoyna told Insider. “With the way things are going now in the global north, there will be investment in research and I believe we will be able to uncover more of these unknowns.”