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Health

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

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

  • 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.

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

Matt Ford underestimated the pain from monkeypox.Matt Ford

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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Health

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

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

  • 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.

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

Matt Ford underestimated the pain from monkeypox.Matt Ford

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.”

Read the original article on Insider

Read original article here

Health

4 physical signs you have a commonly misdiagnosed skin condition that increases the risk of depression and scarring, and how to treat it

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A close-up of a woman’s blackhead-like lumps caused by hidradenitis suppurativa.Getty Images

  • Hidradenitis suppurativa (HS) is a commonly misdiagnosed skin condition that appears on the armpits and groin.

  • HS can lead to disability and depression if left untreated.

  • Painful, itchy, and pus-filled bumps on the armpits, buttocks, genitals, and breasts are signs of HS.

Hidradenitis suppurativa is a rare but potentially debilitating skin condition that can leave patients disabled or with permanent scarring.

The man had had three days of “excruciating” penile pain before presenting to doctors.Getty

A skin condition that affects the armpits, genitals, and breasts can have devastating impacts on patients — yet it’s commonly misdiagnosed.

Hidradenitis suppurativa (HS) affects only 1-4% of the population, according to Cleveland Clinic, yet the condition can have an “extreme impact on life.” The disease can cause painful, itchy, and pus-filled bumps to form under the skin, and the size and pain of HS legions can create issues with mobility and flexibility. Patients with extensive legions can qualify for federal disability benefits.

Patients with HS are also more likely to have depression and anxiety, according to a 2020 meta analysis published in the Journal of the American Academy of Dermatology. A 2018 paper in the Journal of Investigative Dermatology found HS patients have a significantly higher risk for suicide, which authors deemed a “very clear indicator of how profoundly HS can affect patients’ lives.”

The condition is commonly misdiagnosed due to patient embarrassment around seeing a doctor, a physician being unfamiliar with signs of HS, and misinformation about treatments, Men’s Health reported.

HS starts during puberty and is more common among Black people, smokers, people who are overweight, and women. If caught early, doctors can manage the condition with antibiotics, prescription ointments, hormone pills, and steroid injections, according to Kaiser Permanente.

Physical signs of the rare, but debilitating condition include itchy lumps that merge together overtime and cysts that form on the groin, armpits, or buttocks.

You have lumps the size of marbles or peas under your skin.

LUIS ROBAYO/AFP via Getty Images

The most common signs of hidradenitis suppurativa are painful, pea-sized lumps under the skin, per Mayo Clinic. The condition starts with one painful lump that can persist for weeks or months. Often, the lumps heal slowly and come back, sometimes opening up and leaking odorous pus.

HS can also present as several blackheads appearing in small, pitted areas of the skin.

Your groin, genitals, armpits, or buttocks contain pimples and are itchy.

Getty Images

The skin condition affects areas that rub together and contain sweat glands, like the armpit, groin, genitals, breasts, and buttocks.

Texas-based dermatologist Adam Mamelak told Men’s Health that people with hidradenitis suppurativa might feel embarrassed to see a doctor because the areas the disease impacts are sensitive, leading to delayed diagnosis.

Your skin appears red, tender, and swollen in some areas.

Getty Images

HS causes hair follicles or sweat glands to become clogged and inflamed due to an abnormal overgrowth of cells. A person with the condition may experience red, tender, and swollen skin around the armpits, butt, and other areas of the body that rub together, which is an early sign of HS, according to the Cleveland Clinic.

Lumps that look like acne or boils start growing and joining together.

Getty Images

The American Academy of Dermatology Association (AADA) said cysts or boils caused by hidradenitis suppurativa repeatedly heal and reopen, causing hollow tunnels called sinus tracts to form beneath the skin.

The tunnels can cause hidradenitis suppurativa lumps to grow and join together as the condition progresses. These could develop into abscesses that fill up with fluid, like pus or blood, and become painful, according to the AADA.

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Entertainment

Oprah Winfrey Heart Problem Was Misdiagnosed by Doctor in 2007

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  • Doctors misdiagnosed Oprah’s thyroid problem as a heart issue in 2007, Winfrey told The Los Angeles Times. 
  • Winfrey confronted one of the doctors, who told the television personality “I wasn’t going to have you die on me.”
  • The interview was to promote her new documentary “The Color of Care.”

Oprah Winfrey spoke out about how medical racism and access to healthcare impacted her own life — including the time a doctor misdiagnosed a thyroid issue that caused heart palpitations. 

“And she said, ‘What was I gonna do? You’re Oprah Winfrey, and I wasn’t going to have you die on me without having done everything I thought I could do,'” Winfrey told The Los Angeles Times.

Winfrey said she thought the doctor had acted “irresponsible.”  

“And I also thought, for the first time, ‘I can see now that when you show up and you’re a known person, although everybody seems excited to see you, they’re also nervous because they’ve got to also cover themselves,'” Winfrey said.

Winfrey spoke about her experiences as a Black woman when dealing with the healthcare system. The 68-year-old talk show legend said being a celebrity accessing healthcare had its drawbacks, but also its advantages.

“I noticed that things change for you when you are a person who is known. You get the doctor’s appointment. You don’t have to wait in line. You don’t have to deal with a lot of excess delays that other people have. And so I have lived this life of privilege and advantage, and then been exposed to the best of healthcare. 

The interview was partly to promote a documentary Winfrey is producing called “The Color of Care,” which tackles racial health inequalities. In the US, racial disparities lead to a lower quality of healthcare and death due to preventable diseases. During the COVID-19 pandemic, people of color and lower-income people were more likely to contract and die from COVID-19.

Winfrey said she was inspired to produce the film after learning of Gary Fowler, a Black man who died on his couch after being rejected from three emergency rooms for COVID-19 symptoms. 

Winfrey also revealed during the interview that she had stayed in her home for 322 days straight during the pandemic and will continue to wear masks as a precaution. 

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Health

Woman claims doctor misdiagnosed cancer as stomach pains

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A doctor told one woman “maybe it’s not such a bad thing” that it hurt every time she ate. Then she discovered she had cancer.

TikTok user Amanda posted a tearful video recapping her doctor’s visit nearly a year ago when she was feeling pain when eating and suffering from extreme abdominal cramping for months. She claims he wrote off her symptoms as stomach pain.

After being dismissed initially, Amanda discovered the cause of her abdominal distress was actually colon cancer. She was shocked that the previous doctor overlooked her “textbook colon cancer symptoms” simply because of her weight.

Amanda posted a video in February, which has over 245,000 views and 44,000 likes, reflecting on that day. “I took that video a year ago today, and in a month from now, it will be the anniversary of when they found my cancer,” she said.

“It still baffles me that a doctor ignored all of my textbook colon cancer symptoms to just put fat ignorance, lazy medicine on me,” she added.

The older clip, posted in February 2021, got over 580,000 views and 105,000 likes. “‘I’m in pain when I eat,’” she said through tears, “and he looks at me and said … ‘maybe that’s not such a bad thing.’”

Amanda’s viewers were quick to champion her, rallying her ability to advocate for herself and her medical needs.

“I would have sued for malpractice,” commented one TikToker under the video.

“I will never forget that video. I cried so hard for you. that was so awful what they did,” said another.

“Fatphobia is dangerous. We shouldn’t have to be warriors but I’m so proud of you for being one,” wrote someone else.

As Amanda grew sicker — losing more weight and not eating — she knew something was wrong, but the doctor didn’t listen.
@mandapaints/Instagram

“There are only so many times that a doctor can tell you that it’s your fault that you’re sick, it’s your fault that you’re fat or that you’re useless for being fat,” she told BuzzFeed, recalling the traumatizing doctor’s visit. “There’s only so many times that you can hear that.”

She recalled feeling like the doctor “didn’t care,” because he wasn’t willing to run any tests and frequently interrupted her. After leaving the appointment, she sat in her car and cried, making the original TikTok video that then went viral.

She underwent chemotherapy after her diagnosis, which left her in complete remission.
@mandapaints/Instagram

After receiving a chorus of encouragement from her followers, she began the hunt for a new doctor — this time, a woman. Her new doctor ordered a colonoscopy, discovering a tumor.

“I was like, ‘That makes sense,’” she said. “I was in so much pain for so long, being ignored.”

Amanda, who is now in complete remission after going through chemotherapy, said the long-lasting effects of her diagnosis aren’t just physical.

Amanda’s initial doctor dismissed her stomach pain, saying it wasn’t “a bad thing” for her to not eat because of her weight.

“The residual anxiety, trauma and grief have really been kicking my butt. I would probably say that it’s almost as bad as the chemo was on my body,” she said.

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Health

ICU nurse, 33, claims her lung cancer was misdiagnosed as long Covid

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An intensive care nurse claimed that her lung cancer was misdiagnosed as long Covid – despite never testing positive for the virus. 

Brogan Williams, 33, from Wolverhampton, was in remission from breast cancer when she started noticing back pain and shortness of breath in October 2020, but was unable to make a face-to-face appointment due to the pandemic.  

After going to A&E with chest pains, the mother-of-one was diagnosed with Covid Lung, a symptom associated with Long Covid. It wasn’t until the end of June this year Brogan was sent for scan and biopsy, when her oncologist discovered a lump in her neck.    

In July, a CT scan showed cancer and fluid on her lungs, and the nurse now believes that the lack of in-person appointments are to blame for doctors not catching the disease sooner. 

She told  the Birmingham Mail when she tried to seek help initially, doctors were dismissive of her, saying: ‘I felt like they were telling me to stop being silly and to just get on with it.’

Brogan Williams, 33, from Wolverhampton, was in remission from breast cancer when she started noticing back pain and shortness of breath in October 2020. She is pictured with daughter Freya and husband Gareth

Brogan’s cancer journey began aged 30, when her husband noticed that her nipple was inverted. The pair were trying for a baby and thought it may be a sign of pregnancy. 

When Brogan’s period came, she decided to get the inverted nipple checked out by her GP. 

Two weeks later, in January 2019, Brogan was diagnosed with stage three grade 3 Her2 positive invasive breast cancer with confirmed lymph nodes spread. 

The mother underwent six rounds of intense chemotherapy with two admissions for neutropenia sepsis before having an anaphylaxis reaction to her final round of chemo. 

After going to A&E with chest pains, the mother-of-one was diagnosed with Covid Lung, a symptom associated with Long Covid. It wasn’t until the end of June this year Brogan was sent for scan and biopsy, when her oncologist discovered a lump in her neck

Brogan had a mastectomy on her left breast with temporary reconstruction – which would send her back into surgery 24 hours for an operation to remove a hematoma. 

She then had to undergo 15 rounds of radiotherapy, suffering with skin burns, soreness, huge fatigue and chest infections as a result of her treatment. 

Metastasis: How cancer travels from one part of the body to another

Cancer is a condition where cells in a specific part of the body grow and reproduce uncontrollably. The cancerous cells can invade and destroy surrounding healthy tissue, including organs.

Cancer sometimes begins in one part of the body before spreading to other areas. This process is known as metastasis.

Explaining the process in a paper published in the journal Cell, Dr Joan Massagué, head of Memorial Sloan Kettering’s Center for Metastasis Research, said: ‘From the time a tumour begins to form until it is surgically removed, it is shedding tumour cells into the body.

‘Most of these cells die, but a few may not.’

These stragglers can go into hiding, only to flare up later somewhere else – a phenomenon termed latent (or dormant) metastasis. 

When all active treatment was over, Brogan had to continue chemotherapy once again – but on her 11th cycle she was told her heart was failing. 

Brogan was forced to temporarily stop treatment while taking heart medication to help strengthen her left ventricle. 

In March 2019, Brogan underwent a DIEP reconstruction with right mastectomy, which, because of the stress of the operation, caused her heart to fail once again. 

Her heart stabilised with the help of medication, but facing severe breathlessness and a new breast infection, the mother’s recovery was slower than planned. 

In October 2020 Brogan was in remission, but during the pandemic complained to GPs and oncologists about pains in her chest. She was told that she was too young for her cancer to come back. 

In February this year, the mother had an MRI of her spine, which came back clear. Brogan returned to work in July. She underwent a CT scan which showed lung metastasis shortly before her 33rd birthday.

‘But actually, if they’d done a scan of my chest, they would have seen that there was cancer in my lungs at that point’, she said. 

‘Now it’s in both lungs and is very advanced. It’s in my neck and I have two spots on my liver which they can’t rule out as cancer too.’ 

Brogan is now waiting for test results to find out exactly what type of cancer she has but says she’s a ‘ticking time bomb’ without treatment. 

Brogan’s loved ones have started a GoFundMe page for the mother to take her daughter and her husband on a once-in-a-lifetime trip to Disneyland Florida. 

Gwen Nuttall, chief operating officer at The Royal Wolverhampton NHS Trust told the publication: ‘A patient would only be admitted from A&E should there be a clinical reason at that point for them needing to be so. In many cases, further investigations are carried out as an outpatient.

‘We are sorry that Brogan feels she didn’t receive the care she would have expected, we would welcome the opportunity to discuss this with her in more detail. Our patient experience team will be making contact with her.’

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