This woman was misdiagnosed with bipolar disorder. She was diagnosed with a rare autoimmune disease

A relatively new class of autoimmune diseases that affect the brain is forcing psychiatrists to reconsider some diagnoses.

Although rare, patients with autoimmune encephalitis often present with psychotic symptoms, and this can lead to misdiagnosis of mental illness, says Dr. Chris Hahn, a neurologist at the Cumming School of Medicine at the University of Calgary.

This is what happened to High’s Nora Scott river, alta, a city abu70 kilometers south of Calgary.

Before her medical journey began in late 2017, Scott says, “everything was going well.”

But then he started having difficulty sleeping. “It felt like my mind was always on,” he told John Chipman of the CBC’s Audio Documentary Unit.

Scott had to take a leave of absence from his quality assurance job at a local manufacturing plant. Stuck at home, Scott says she has made up her mind to clean her house.

His partner, Chris Johnson, says he could tell it was no ordinary mess.

“I would come home from work and there would be posts all over the house about everything with pictures and prices, trying to sell things.”

Scott also displayed other out-of-character behaviors, such as planning multiple trips and other lavish spending – patterns that may also be present for people experiencing psychosis due to mental illness.

Eventually Johnson took him to Calgary’s South Health Campus hospital, where Scott was admitted to a psychiatric ward for 30 days.

By the end of that stay he was diagnosed with bipolar disorder.

a brain is under attack

But it would take another four years, and a second longer stay in the hospital, before it was discovered that Scott actually had a rare autoimmune disease called anti-NMDA receptor encephalitis. First discovered in 2007.

As Hahn explains, autoimmune disease is a broad category of conditions where the body’s immune system goes into overdrive and begins attacking itself instead of outside threats like disease and infection.

With various forms of autoimmune encephalitis, it is the brain that is subject to immune attack, often targeting areas that affect mood and perception, in a way, mimicking a mental disorder.

Whereas Anti-NMDA Receptor Hahn says that while encephalitis can be fatal if left untreated, in rare cases it may resolve on its own, which is why Scott or patients like him may get better. And if they are on mood-stabilizing medications at the time, this could reinforce a psychiatric misdiagnosis.

Chris Johnson says that at the time of his partner’s diagnosis of bipolar disorder, the hospital staff were preparing him for some difficult situations.

“They put me in touch with social workers and told me that my life would be changed forever and that he could not be left home alone, and could not be trusted with any bills or cards or anything.”ng.”

How was he diagnosed?

When Nora Scott needed to be hospitalized for the second time in November, 2021, she became confused and lost in work. His memory of the second incident is completely dark.

“I was in High River Hospital and when I woke up it was January,” she said. “So I lost more than a month.”

The kind of confusion she experienced, as well as the loss of physical control her partner observed, are not characteristic of bipolar disorder.

This time it was Scott He was treated in a psychiatric unit at Rockyview Hospital in Calgary. It was the holiday season, and a new member of the psychiatric team, Dr. Jadah Johnson, was on duty.

Dr. Johnson says the head nurse was concerned that Scott was becoming more ill.

Dr. Johnson said Scott had atypical symptoms of bipolar disorder, and the psychiatrist suggested to the hospital’s neurology unit that he might actually have anti-NMDA receptor encephalitis.

The unit had already considered and rejected that diagnosisis, so Dr. Johnson initially let it go.

However, Scott was not responding to treatment. So Dr. Johnson went back to the neurology unit and pressured her colleagues to reconsider her alternative diagnosis.

I can honestly say I did it for your kids– Dr. Jadah Johnson

“It didn’t feel good to go back and say, ‘I really think this is it,’ and essentially be told, ‘You’re a junior idiot,’ like, go away. But, I think I have a healthy dose of not caring what people think.”

Dr. Johnson draws Scott’s blood, and insists that the lab immediately test it for anti-NMDA receptor encephalitis.

The results came positive. A second, even more reliable, spinal fluid test also confirmed this.

new national guidelines

Recovery Alberta is the government agency responsible for mental health care in the province. A written statement provided to CBC said that, in part, autoimmune encephalitis is a complex condition that can be challenging to diagnose, but “Physicians in Alberta have access to provincial clinical guidance and expert consultation to support the assessment and diagnosis of complex conditions, including autoimmune encephalitis.”

It says he cannot comment on individual patient care or earlier clinical decisions.

Dr. Chris Hahn is one Member of Scott’s current medical team, but was not involved in his initial treatment.

However, the challenge of her case and others like it inspired Hahn to lead efforts to develop A set of national guidelines to help identify autoimmune encephalitisWhich was released in 2024.

Nevertheless, he emphasizes that it is rare to misdiagnose a mental illness when autoimmune encephalitis is the underlying cause of psychosis.

A study published this month in the Lancet medical journal Say a person is 1,500 times more likely to have a psychotic episode than, for example, young-adult onset psychosis associated with mental illness From anti-NMDA receptor encephalitis.

Dr. Jay Shah, associate professor of psychiatry at McGill University in Montreal, who is also a psychiatrist and researcher at the Douglas Mental Health University Institute, a McGill-affiliated hospital, says psychotic episodes may have multiple underlying causes, but an autoimmune origin has yet to be determined. This can be better understood in the last decade or so.

Unfortunately, Hahn says, there’s still a stigma surrounding mental health conditions. “And then you read about autoimmune encephalitis… a condition that is treatable or sometimes even curable. There are (unauthenticated private) Labs will perform this test in a way that is not up to standard and people will get false positives.

Shah explains that it is wrong to assume that a diagnosis of autoimmune encephalitis is good news while mental illness is bad.

“We’re trying to avoid this dichotomy, where we present the autoimmune form as treatable and hopeful and optimistic, and the other — the more common form — not as treatable, because that’s not the case.”

And, he points out, people can place betsAvoid mental illness – or learn to manage it – and live a meaningful life.

“It has been shown again and again… by studies here and in (other countries) that people get better with specific-form PsyChoices, provided they receive best practice care and treatment,” said Shah.

Four years after the judgment call that led to Scott’s diagnosis, he and Dr. Johnson spoke for the first time.

“I can honestly say I did it for your children,” the doctor told him Recently during a video call.

“I heard you have two kids at home and I was just like, ‘I can’t believe you got so sick because of me.'”