A Winnipeg man who was misdiagnosed with a fatal disease by two different doctors says anybody believed to have a life-threatening condition should be sent to a specialist in the field for final determination.
A neurologist at Sunnybrook Hospital agrees.
Fredrik Bergstrom, 51, went to see his family physician in March after developing a limp and numbness in one foot for no apparent reason.
“He did a 10-minute examination and then he literally teared up and hugged me and he said, ‘Fredrik, this is ALS,'” Bergstrom said.
He was told the disease was advanced and would progress rapidly.
“We’re at the end of the line,” he recalled his doctor saying.
Shocked, Bergstrom immediately called his wife and told her to come home from work. He said the two cried through the night.
“It was just absolutely devastating,” he said.
Fredrik and Carla Bergstrom with their two teenage daughters (Submitted by Bergstrom family)
Amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body.
Over time, as the muscles break down, people lose the ability to walk, talk, eat, swallow, and eventually breathe.
There is no cure.
The disease runs in his family. His younger brother died from it more than a decade ago, and his father passed away from it two years ago, Bergstrom said.
Bergstrom went to see another doctor at the same facility three days later for a second opinion, and says that doctor agreed with his family doctor’s diagnosis.
“He used words such as ‘catastrophical neurological breakdown’ and ‘rapid progression ALS,'” he said. “So now not only am I dying, I’m dying in the fast lane. Everything is moving incredibly fast.”
At that point, Bergstrom and his wife Carla sat down to tell their two teenage daughters.
“It was scary,” Carla said. “We’re like, what’s going to happen to our life, our world?… It was not easy.”
His symptoms progressed and he began having numbness in his other foot. He started to use a cane to help him walk.
By now, Bergstrom says, plans were moving quickly.
Within two weeks, his diagnosis was put into writing for insurance and disability claims, he was told he would never return to work and soon would be unable to walk. He was given a disability placard for his car, and was even contacted by a therapist regarding medically assisted death.
He shut down his business and started making calls.
“We had to tell friends and family. I had to tell my aging mother, who’s already lost a son to this, that she was about to lose her last son and that was — that was a tough conversation,” he said.
Part of the paperwork filled out by Fredrik’s doctors say his condition was ‘rapidly worsening’ and that he ‘may be palliative.’ (Tyson Koschik/CBC)
Bergstrom was told he wouldn’t be alive to see Christmas and at best might live until September or October.
The family had already begun planning his funeral, Carla said.
“2023 was just a summer of crying,” she said. “It was horribly depressing.”
‘Did he just say that I’m not dying?’
At the end of July, Bergstrom had an appointment with a third doctor — a neurologist.
After receiving a full panel of tests and a more exhaustive examination, he was given another shock.
The doctor told Bergstrom he thought they would be having a palliative, end-of-life discussion, but instead the doctor told him he had likely been misdiagnosed.
“My jaw dropped. Did he just say that I’m not dying?” Bergstrom said. “I was in shock. I had made a playlist for my funeral. I’d asked people to speak at my funeral. Now I’m no longer dying?”
For the first time in months, Bergstrom and his wife had a little bit of hope.
“We left that office with this renewed sort of feeling,” Carla said. “What if [the other doctors] were wrong? It finally gave us something to smile about on the way home.”
The Bergstroms are in the midst of planning a big Christmas celebration with family and friends after learning Fredrik is not afflicted with ALS. (Tyson Koschik/CBC)
He was referred to another doctor and another, who told him the same thing: He did not have ALS.
Now on his sixth doctor and specialist, Bergstrom says they are certain of the diagnosis.
Instead, it’s believed he has neuropathy, or nerve damage, which is common among diabetics such as himself.
“It was great joy, but it was also anger,” he said. “This hurt me. This hurt my family, shook us to the core.”
Bergstrom does not want to take any legal action against the medical professionals who misdiagnosed him, and says he knows it was a mistake.
However, he believes any diagnosis as serious as this one should only come from a specialist.
“I think that doctors really need to understand the dire consequences of such a hard and severe diagnosis,” he said.
“If you have a suspicion of such a severe and difficult diagnosis, that should be elevated to an expert. The fact that, both verbally and in writing, I have an ALS diagnosis — that should not have happened.”
‘Complicated diagnosis’: ALS expert
ALS is difficult to diagnose because the initial symptoms can be very similar to other diseases, according to the ALS Society of Canada.
“It’s rare. Only two to three patients per 100,000 have this disease,” Dr. Lorne Zinman, a neurologist at Sunnybrook Hospital and head of Canada’s largest ALS clinic, told CBC.
Diagnosing ALS is complex and can take months, he says.
The Sunnybrook clinic in Toronto diagnoses about 300 new ALS cases a year, and it’s currently following about 750 ALS patients, Zinman said.
According to the ALS Association, the disease is initially misdiagnosed in 10 to 15 per cent of cases, meaning the symptoms are being caused by another disease or condition.
Dr. Lorne Zinman, a neurologist at Sunnybrook Hospital in Toronto, where he also heads the biggest ALS clinic in Canada, says a diagnosis of ALS should come from specialists, not family physicians. (CBC)
However, Zinman says, a misdiagnosis by a neurologist or specialist is rare.
He said neurologists or neuromuscular experts assess the patients and rule out conditions that tend to mimic ALS.
He noted it can take upwards of 18 months from the onset of symptoms to come to a diagnosis.
He says family doctors will only ever see a handful of ALS cases in their career.
“I’m sorry to say this: Family physicians should never be making a diagnosis of ALS because it’s a diagnosis of expertise and a diagnosis of exclusion,” Zinman said. “It’s very hard to give that diagnosis. It’s complicated.”
Zinman says there are no diagnostic bio-markers or blood tests to diagnose ALS, so getting a patient referred to the right specialist is imperative.
He also stresses that early detection is vital to helping people who have the disease.
If a family doctor suspects a patient might have ALS, Zinman says, they need to be referred to a specialist for detailed testing and should be placed in touch with an ALS clinic immediately.
A Winnipeg man who was misdiagnosed with a fatal disease by two different doctors says anybody believed to have a life-threatening condition should be sent to a specialist in the field for final determination.
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