Families upset with lack of information about mystery New Brunswick brain illness

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Families upset with lack of information about mystery New Brunswick brain illness
Author of the article:Canadian Press
Canadian Press
Kevin Bissett
Publishing date:Apr 25, 2021 • 10 hours ago • 4 minute read • Join the conversation
A mysterious neurological syndrome in New Brunswick has caused six deaths and 44 suspected cases linked to the brain disease.
A mysterious neurological syndrome in New Brunswick has caused six deaths and 44 suspected cases linked to the brain disease. PHOTO BY GORODENKOFF /iStock / Getty Images
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FREDERICTON — Families who fear their loved ones are afflicted with a mysterious neurological syndrome in New Brunswick say they’re losing patience waiting for information from the health officials who are investigating.

“I can appreciate that maybe the government is afraid to give too much information and scare people, but at the same time, not giving information is also scaring people,” said Steve Ellis, whose father has all the symptoms of the mystery illness.


There have been six deaths and 44 suspected cases linked to the brain disease.

According to the New Brunswick Health Department, the first case dates to 2015 but wasn’t identified until early 2020, when a cluster of cases was detected by the Creutzfeldt-Jakob Disease Surveillance System, operated by the Public Health Agency of Canada.

The agency conducts national surveillance for prion diseases, such as Creutzfeldt-Jakob disease, which cause neurological symptoms.

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Symptoms of the mystery syndrome in the province include rapidly progressing dementia, muscle spasms, atrophy and a host of other complications. Creutzfeldt-Jakob disease, or CJD, has been ruled out in the New Brunswick cases.

While most of the cases have been identified in the northeast and southeast of the province, it’s unknown if geography is a link. At least one researcher has said a potential cause may be some kind of environmental exposure.

Ellis, who has started a support group on Facebook for the families, says his father, Roger Ellis, 63 of Bathurst, N.B., had no neurological issues before showing symptoms two years ago.

“It was June 2019 when he collapsed at home with a seizure. He went to hospital and within weeks he had a major downhill spiral where he was having hallucinations, delusions, aggressive behaviour, weight loss and almost childlike behaviours,” he said in an interview last week.


Since then, Ellis said his father has undergone a wide range of tests, including a spinal tap, in order to rule out suspected causes. His father now lives in a special care home.

“We thought he was the only one dealing with something like this until only a month ago,” Ellis said. “The worst part is seeing Dad change. The second worst part is not knowing why.”

Ellis said he has been pressing government officials for some answers, but getting no reply. News of the unknown syndrome first emerged through a March 5 memo from deputy chief medical officer of health Dr. Cristin Muecke to the province’s various medical professional associations.

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Last week, Health Minister Dorothy Shephard said a website is being developed to provide information to the public, and that it was “expected to go live any day.”

Peggy Jenkins, whose son appears to have the illness, said she’s not surprised officials aren’t providing more answers.

“I’m not surprised because I don’t think they know, but I’m surprised they are not talking to the families more, just to reassure us,” she said.

Her son Andrew, who lives in Riverview, N.B., was just 39 when he started exhibiting symptoms in February 2019.

She said he couldn’t finish sentences or remember names, and by September of that year he was admitted to hospital and subjected to a barrage of tests, including spinal taps, ruling out CJD and a number of other possibilities.

“He could sit down today and learn how to print, but next week he wouldn’t know how to print,” she said. “If this is happening to a lot of people, it’s very scary.”

Jenkins said her son’s neurologist is working with Dr. Alier Marrero of the Vitalite Health Network in Moncton, who is leading the research into the mystery syndrome, but she doesn’t know if her son is included in the study group because health officials have not responded to her.

Marrero did not respond to a request for an interview for this story.

Trina Musseau of Edmonton has been watching the news of the mystery illness with interest after the death of her father,Cedric Mills,five years ago. Mills was 60 when he died in Bridgeport, N.L. He became ill in 2014 after spending 10 summers working in Pennfield, in southwestern New Brunswick, as a fisherman and spraying fishing nets.

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“I’ve contacted public health in New Brunswick and Dr. Marrero and I haven’t heard back from either,” she said. Musseau joined the Facebook support group when she saw that her father had exhibited the same symptoms as other people suspected of having the illness.

“They tested him for every disease known to man — Lyme disease, Parkinson’s, (multiple sclerosis), you name it, they tested him for it,” she said. After his death, his brain was tested for CJD, but the result was negative.

“The doctors said my father was a medical mystery. That’s the term they used,” she said.

Musseau said she has all her father’s medical records and wants to share them with the researchers in New Brunswick, but no one has called her back. She’s hoping that with enough information, doctors can finally provide some answers.

“At this point we’ve lost my Dad and there’s no bringing him back. But if there was one wish that he could have had, it was to know what was wrong with him. That goes for the family too,” Musseau said.
 
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B00Mer

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I have Brain Fog since COVID-19.. and have had a Heart Attack 1 month ago.. started off as a pain in the chest, numb left arm.. I figured gas, the I got a sharp pain in the groin.. they don't tell you that is a symptom..

They won't let me drive a big truck anymore. :(

 

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New Brunswick ramps up efforts to solve mystery behind unknown brain disease
Author of the article:Canadian Press
Canadian Press
Publishing date:Jun 03, 2021 • 6 hours ago • 3 minute read • Join the conversation
A mysterious neurological syndrome in New Brunswick has caused several deaths and dozens of suspected cases linked to the brain disease.
A mysterious neurological syndrome in New Brunswick has caused several deaths and dozens of suspected cases linked to the brain disease. PHOTO BY GORODENKOFF/ISTOCK /Getty Images
Article content
FREDERICTON — New Brunswick is redoubling its efforts to find the cause of a baffling neurological disease that has killed six and infected 48 others, announcing Thursday that an expert committee will lead the ongoing investigation.

“The discovery of a potentially new and unknown syndrome is scary,” Health Minister Dorothy Shephard told a new conference. “I know that New Brunswickers are concerned and confused about this potential neurological syndrome.”

Meghan's suicidal cry for help made Prince Harry realize importance of listening
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Shephard also announced that health officials have drafted a new, comprehensive questionnaire for patients and their families. The questionnaires, which can take up to four hours to complete, will be filled out over the next six to eight weeks, and the new committee has a four-month schedule to complete a clinical review of every patient’s medical records.

Part of the committee’s mandate is to provide second opinions and to rule out potential causes.

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“We have faith that this diligence will pay off,” Shephard said.

Dr. Edouard Hendriks, one of committee’s co-chairs, said the nine-member group is facing a tough challenge. “There are many diseases that lead to these kind of problems, including Alzheimer’s disease, vascular dementia and other types of dementia,” said Hendriks, vice-president of medical, academic and research affairs at the Horizon Health Network.

“All of these diseases start pretty much the same way,” he added, “with a little bit of cognitive disorder, some strange muscle movements. And it’s only over time ⦠that specialists can say, ‘This seems to be more this than that.”‘

The symptoms for the disease include rapidly progressing dementia, muscle spasms, atrophy, memory loss and hallucinations. Fifty-one per cent of the cases have involved women and 49 per cent men, and the age range has been between 18 and 85.

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“I know that many people in the province feel frustrated and I understand that, too,” Shephard said, acknowledging that the families of some victims have complained that the government is doing a poor job of sharing information.

The provincial Health Department says the first case of the disease dates back to 2015, but a potential cluster of cases wasn’t identified by federal officials until December 2020.

Shephard said the federal Creutzfeldt-Jakob Disease (CJD) Surveillance System spotted a pattern of symptoms among patients last year and then ruled out the possibility that the syndrome was a human prion disease like CJD.

News of the unknown syndrome first emerged through a March 5 memo from the province’s deputy chief medical officer of health, Dr. Cristin Muecke, to various medical professional associations in New Brunswick.

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At the time of their referrals, most of the existing patients were living in and around the Moncton, N.B., area and the Acadian Peninsula in northeastern New Brunswick. But there is no hard evidence to suggest the syndrome is linked to geography.

Shephard declined to be more specific when asked to describe where the patients are from. “They’re not just secluded to two areas,” she said. “It would be short-sighted to start targeting areas.”

Last week, the province opened a special clinic for patients. The Special Neurodegenerative Disorder Clinic is located at the Moncton Hospital. Shephard confirmed that 40 patients had already been seen at the facility.

As well, the Horizon Health Network launched a website that offers details about what is known about the illness. The website says an investigation team is exploring all potential causes including food, environmental and animal exposures.


In March, a researcher with the Public Health Agency of Canada said a potential cause could be some kind of environmental exposure.

Michael Coulthart, the head of the Creutzfeldt-Jakob Disease Surveillance System, said many neurological disorders have features that overlap, but he said he has not seen anything like the New Brunswick cluster before.

He said the fact that the cases have been spread over a number of years will make it more difficult to pinpoint a source.

On Thursday, Shephard said the committee has to remain open to all possible causes.
 

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Dec 3, 2008
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New Brunswick
New Brunswick ramps up efforts to solve mystery behind unknown brain disease
Author of the article:Canadian Press
Canadian Press
Publishing date:Jun 03, 2021 • 6 hours ago • 3 minute read • Join the conversation
A mysterious neurological syndrome in New Brunswick has caused several deaths and dozens of suspected cases linked to the brain disease.
A mysterious neurological syndrome in New Brunswick has caused several deaths and dozens of suspected cases linked to the brain disease. PHOTO BY GORODENKOFF/ISTOCK /Getty Images
Article content
FREDERICTON — New Brunswick is redoubling its efforts to find the cause of a baffling neurological disease that has killed six and infected 48 others, announcing Thursday that an expert committee will lead the ongoing investigation.

“The discovery of a potentially new and unknown syndrome is scary,” Health Minister Dorothy Shephard told a new conference. “I know that New Brunswickers are concerned and confused about this potential neurological syndrome.”

Meghan's suicidal cry for help made Prince Harry realize importance of listening
Trackerdslogo
Shephard also announced that health officials have drafted a new, comprehensive questionnaire for patients and their families. The questionnaires, which can take up to four hours to complete, will be filled out over the next six to eight weeks, and the new committee has a four-month schedule to complete a clinical review of every patient’s medical records.

Part of the committee’s mandate is to provide second opinions and to rule out potential causes.

Advertisement
STORY CONTINUES BELOW

Article content
“We have faith that this diligence will pay off,” Shephard said.

Dr. Edouard Hendriks, one of committee’s co-chairs, said the nine-member group is facing a tough challenge. “There are many diseases that lead to these kind of problems, including Alzheimer’s disease, vascular dementia and other types of dementia,” said Hendriks, vice-president of medical, academic and research affairs at the Horizon Health Network.

“All of these diseases start pretty much the same way,” he added, “with a little bit of cognitive disorder, some strange muscle movements. And it’s only over time ⦠that specialists can say, ‘This seems to be more this than that.”‘

The symptoms for the disease include rapidly progressing dementia, muscle spasms, atrophy, memory loss and hallucinations. Fifty-one per cent of the cases have involved women and 49 per cent men, and the age range has been between 18 and 85.

Advertisement
STORY CONTINUES BELOW

Article content
“I know that many people in the province feel frustrated and I understand that, too,” Shephard said, acknowledging that the families of some victims have complained that the government is doing a poor job of sharing information.

The provincial Health Department says the first case of the disease dates back to 2015, but a potential cluster of cases wasn’t identified by federal officials until December 2020.

Shephard said the federal Creutzfeldt-Jakob Disease (CJD) Surveillance System spotted a pattern of symptoms among patients last year and then ruled out the possibility that the syndrome was a human prion disease like CJD.

News of the unknown syndrome first emerged through a March 5 memo from the province’s deputy chief medical officer of health, Dr. Cristin Muecke, to various medical professional associations in New Brunswick.

Advertisement
STORY CONTINUES BELOW

Article content
At the time of their referrals, most of the existing patients were living in and around the Moncton, N.B., area and the Acadian Peninsula in northeastern New Brunswick. But there is no hard evidence to suggest the syndrome is linked to geography.

Shephard declined to be more specific when asked to describe where the patients are from. “They’re not just secluded to two areas,” she said. “It would be short-sighted to start targeting areas.”

Last week, the province opened a special clinic for patients. The Special Neurodegenerative Disorder Clinic is located at the Moncton Hospital. Shephard confirmed that 40 patients had already been seen at the facility.

As well, the Horizon Health Network launched a website that offers details about what is known about the illness. The website says an investigation team is exploring all potential causes including food, environmental and animal exposures.


In March, a researcher with the Public Health Agency of Canada said a potential cause could be some kind of environmental exposure.

Michael Coulthart, the head of the Creutzfeldt-Jakob Disease Surveillance System, said many neurological disorders have features that overlap, but he said he has not seen anything like the New Brunswick cluster before.

He said the fact that the cases have been spread over a number of years will make it more difficult to pinpoint a source.

On Thursday, Shephard said the committee has to remain open to all possible causes.

I know this has scared quite a few people around here.