Patients, families demand more testing, research into why so many are suffering from neurological illnesses in N.B.

Patients and their families at the centre of an investigation into a neurological condition say their search for answers isn’t over.

Last March, New Brunswick health officials alerted the province's doctors, nurses and pharmacists about a possible cluster of residents with an unknown and potentially new neurological syndrome with symptoms similar to those of Creutzfeldt-Jakob disease, or CJD.

Since then, a cluster of 48 people was identified, but over 200 were referred to the Special Neurodegenerative Disorder clinic in Moncton, otherwise known as the Mind Clinic.

Thirty-five are in zone one — the Moncton region — and 10 are from zone six — the Bathurst and Acadian Peninsula region. Zones two, five and seven have one patient each.

A highly-anticipated report investigating the validity of the neurological syndrome of unknown cause was released Thursday, and found that no such illness exists. Rather, the symptoms point to other existing illnesses, like Alzheimer’s, Parkinson’s, post-concussion syndrome or a number of others.

Patients and families had a meeting with public health officials and Health Minister Dorothy Shephard before the release of the report, and said they received absolutely no answers to their many questions.

“What my dad experienced checked off enough boxes in his autopsy to fall into an Alzheimer’s category, but he went from fine to dead in about four and a half months,” said Tim Beatty, whose father Laurie died in 2019. “But what no one has looked at is causal. Why are all these people displaying so atypically that they’re evading normal diagnosis?”

Stacie Quigley Cormier’s stepdaughter is one of the youngest in the cluster.

She says Gabrielle is heading to Toronto in March for medical testing. But Cormier says the province should be alarmed at how common these neurodegenerative symptoms are in a small province.

“The rate at which these symptoms are presenting in our population in New Brunswick should be extremely alarming to public health, and Minister Shephard’s office,” said Cormier.

“That’s what we’re sounding the alarm bells on and that’s why we want a scientific investigation that’s going to include environmental testing to determine why our population is experiencing these conditions at a higher rate.”

While it was ruled out early, New Brunswick typically sees one case of CJD a year. Cormier has been doing research on how rare some of the other neurodegenerative illnesses are in the Canadian population.

She says they’re searching for a cause – and their questions can’t be silenced.

“We’re requesting that the Government of New Brunswick start a brand new investigation that’s going to allow proper, adequate, seamless gathering of information that does not have any barriers whatsoever and that’s going to allow for environment testing.”