Experts from San Francisco, Miami and the UK say many cases of monkeypox are “missed”.
Some patients receive false negative monkeypox tests, while others are misdiagnosed.
Fear, stigma, miscommunication and misunderstanding contribute to this.
More than 7,100 monkeypox patients have been diagnosed in the United States since this outbreak began with a single case in mid-May.
But Dr. Graham Walker, an emergency physician in San Francisco, says many other monkeypox patients aren’t getting the care and attention they deserve to effectively prevent, diagnose and treat this infectious disease.
Walker says he saw “several patients” whose diagnosis of monkeypox was “missed” by another provider before they landed in his ER in excruciating pain.
“I had a patient who, I saw his chart at another facility, and it said ‘lessions only in the genitals, so it’s unlikely to be monkeypox’ “, he told Insider.
Other clinicians and scientists in the US, UK and West Africa say the same thing: monkeypox is vastly underdiagnosed.
Some misdiagnosed patients end up in so much pain they can’t wear clothes
Across the country since Walker’s emergency, Dr. Lilian Abbo, an infectious disease specialist at the University of Miami, says she’s noticed the same problem.
“We’ve seen patients who have gone to seven centers: three different urgent care, dermatologists and ERs to try to figure out what’s going on,” she said during a recent telebrief from the ‘Infectious Diseases Society of America, highlighting the need for greater awareness of how monkeypox can present.
Raising awareness can have huge implications for both treatment and disease containment. It is possible that if close contacts discover it early enough in the course of their infection (i.e. within the first 4 days after an exposure), the Jynneos smallpox vaccine could be used to completely prevent infection. by monkeypox.
But, “by the time they arrive,” many patients who were misdiagnosed “may have been cured, or some of them may have disease progression,” Abbo said. This progression can be painful.
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 intense. “A patient of mine said, ‘I can’t even wear pants or underwear without pain,'” Walker said.
“Manual” descriptions of symptoms are not always accurate
Part of the reason why monkeypox is underdiagnosed is that this disease outbreak does not operate like the “classic” monkeypox presentations of the past, with classic fever, swollen lymph nodes in the neck and headaches all appearing before the surface of smallpox 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 pock to be the sole marker of the entire infection of somebody.
A July 21 New England Journal of Medicine compilation of 528 case reports from 16 countries around the world establishes clear patterns for this outbreak. Almost two-thirds of the patients studied had lesions in their anogenital (deprived) area, with a majority of patients having less than 10 lesions over their entire body.
The patients “had symptoms that were not part of the case definitions,” Chloe Orkin, author of the NEJM study, told Insider. “The important thing is to help doctors recognize it.”
Fever, fatigue, muscle aches and headaches were among the most common pre-rash signs of a monkeypox infection, which also makes it easy for people to mistake the disease for COVID, initially.
“Every patient I spoke to took a COVID test when they had a fever, and they were like, ‘oh, that’s not COVID,'” Walker said.
Other times, diagnoses are missed because providers don’t get a “good, aggressive scrub” of lesions, he said.
“I’ve seen this before, where people have had a test that came back negative and I’m like, ‘you literally have all the symptoms of monkeypox, this looks exactly like every other case of smallpox from the monkey that I see, and we’ve ruled out other stuff, like herpes, syphilis, whatever.
Some people avoid the diagnosis of monkeypox 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 stronger prescription painkillers like Motrin and Advil.
But many patients, fearing stigma and lacking information, do not seek help.
One of Walker’s patients had been managing his lesions on his own for two full weeks, when he finally decided to seek treatment.
“He just wanted to deal with it at home. He was worried about the stigma, he said he had never had an STD before. But the pain was so bad he finally came in,” Walker explained. . “There’s a lot of fear, there’s a lot 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 illness took very badly” when diagnosed with monkeypox.
“In addition to this stigma, patients who are diagnosed then self-isolate at home for up to four weeks alone,” he told reporters in a Zoom call on Friday. “It’s important to make sure we’re all aware of this, that we’re all working together to reduce stigma, and that we provide patients with mental health services and other support resources after their diagnosis.”
A Nigerian doctor spotted this type of monkeypox in 2017. He hopes people will finally start funding research into this virus.
In Nigeria, where Dr Dimie Ogoina has been studying monkeypox outbreaks linked to sexual contact since 2017, he says he struggles with similar issues of confusion and stigma, which make it harder to get a sense of the true scope of any epidemic.
Often, he suspects, patients with “genital lesions” don’t come to the hospital to be properly diagnosed, but simply go to the pharmacy for STD treatment.
“There’s a lot that’s still unknown about monkeypox” because “it’s a neglected disease,” Ogoina told Insider. “Since the global north now has cases, I’m sure there will be investment in research, and we will be able to uncover most of these unknowns.”
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