Mystery brain disease patient was told Public Health would call. Months later, he's still waiting

Luc LeBlanc was almost relieved when he was diagnosed as a confirmed case of the mystery brain disease that has afflicted 48 New Brunswickers so far.

After months of worry, frustration and questions, he thought he would finally get some answers.

Instead, there has only been more worry and more frustration. And so many more questions.

He wonders how he got the disease. He wonders how bad it will get. He wonders how long he will live. He wonders if the disease is contagious, and if his two children will get it.

• What's causing N.B.'s mystery neurological disease? Worried residents want answers
• Family blasts Health Department over lack of updates on mystery brain disease

"I have a lot of questions," LeBlanc said. "Nothing [has] really been answered."

In an interview with Information Morning Moncton on Thursday, the Dieppe resident, 41, said his ordeal began years ago with recurring "cloudiness."

He'd walk into a room, for example, and forget how he got there.

That progressed to deeper disorientation, then panic attacks "just from the fear of it all."

Eventually, he was referred to Moncton neurologist Dr. Alier Marrero and underwent MRIs, bloodwork, a spinal tap and a CT scan. 

On Jan. 9 of this year, Marrero diagnosed him as having a mysterious brain disease, one of a cluster of cases that has since reached a total of 48 confirmed and suspected cases. So far, the disease has only been found in New Brunswick. Six people have died.

LeBlanc was told Public Health would be in contact with a detailed questionnaire "within days."

More than four months later, he said he still hasn't heard from them.

"I never received any call, nobody contacted me at all, I never got the questionnaire," he said. "It's depressing, because all my symptoms are full-blown."

Alarmed by 6-month gap between appointments

LeBlanc is also troubled by the lack of information being shared by the Health Department, and by the infrequency of appointments with Marrero, who is now leading the province's investigation of the cases.

"In April, I saw him and I was really concerned. I did a physical and he said it was stabilized," he said. "He upped my anxiety meds and said we will meet back in six months and do more tests."

LeBlanc was alarmed. 

"I said, 'Well, that's ridiculous, it's like a ticking bomb. I could pass away before that six months.' "  

I had to go to a Facebook group to get a feel of what's going on, what are the symptoms, all those questions.- Luc LeBlanc, diagnosed with mystery brain disease

Marrero assured him his symptoms are not as advanced as some other cases, and some people live with this disease "for a long time."

"I had other questions, but he brushed them off a bit," and referred him back to his family doctor to discuss the results of the physical.

LeBlanc tried to get answers from his family doctor, but was told his questions were best directed to a neurologist.

His next appointment with Marrero is not until October.

In the end, LeBlanc said, "I had to go to a Facebook group to get a feel of what's going on, what are the symptoms, all those questions." 

• As toll rises from N.B.'s mystery brain disease, Public Health pledges 'regular updates 
• N.B. launches webpage dedicated to tracking mystery neurological disease

He was referring to a private Facebook group for patients and families of patients with the mystery disease. Started by Steve Ellis, whose father, Roger, is one of the suspected cases, the Mystery Neurological Disease NB Support Group now has 338 members.

CBC News requested comment from Marrero through the Health Department, which handles his media inquiries, but was told that "the department is unable to comment on specific cases."

"The department understands there is concern in the community," spokesperson Bruce Macfarlane said in an email Wednesday afternoon.

 "But due to the relatively low number of cases, we will not be releasing more personal information as it could lead to a privacy breach for patients."  

Public Health's duty to inform the public, LeBlanc says

The situation has left LeBlanc feeling like he's been left to cope with this disease on his own and in the dark. He's calling for Public Health to reach out to every one of the 48 patients to help ease their fears in any way they can. 

"To my knowledge, they haven't spoken with anybody at all," he said. "I know they're trying their best, it's a new disease, but Public Health has a job to do to inform the public ... to just bring awareness to it."

LeBlanc acknowledged that Public Health may not actually know much more, if anything, than they've already made public on the neurological disease information website at the government's gnb.ca website.

• VIDEO: Experts scramble to determine cause of unknown neurological disease in N.B

But he thinks they still have a responsibility to those New Brunswickers grasping for any kind of feedback.

"It's a big mystery and for myself, I don't know how long I'll be completely sane," he said. "I would like to know what's the next step of the decline … to put my mind at ease, to not wake up and just feel more and more that I don't know what to do."

Asked why patients have not yet been contacted by Public Health, spokesperson Bruce Macfarlane said the department has completed the questionnaire and is "still in the process of obtaining all contact information and signed consent forms from cases under investigation."

"Public Health New Brunswick will be in touch by phone to conduct interviews with individuals very soon," he said. 

CBC News journalists are working diligently to try to learn more about this disease. If you or a family member have information you'd like to share with us, please email neuro-nb@cbc.ca.

N.B.'s mystery disease: What we know so far

What is it?

An unknown neurological disease with similarities to Creutzfeldt-Jakob disease, a rare and fatal brain disease, or prion disease.

What's a prion disease?

A prion disease is a rare disease that pertains to a misfolded protein in the brain. The abnormal folding of the prion proteins provokes a chain reaction that destroys neurons and creates holes in the brain.

When was it discovered?

The first occurrence was retroactively found to have occurred in 2013, after the possible existence of a cluster of disease was first recognized by the CJD Surveillance System at the Public Health Agency of Canada in 2020. In 2019, 11 additional cases were identified, with 24 more in 2020 and 12 so far in 2021.

When was it made public?

A March 5 internal memo from Public Health to health-care professionals was obtained by Radio-Canada and reported by Radio-Canada and CBC News on March 17.

Where are the cases?

The disease has so far only been identified in New Brunswick. It appears to be concentrated on the Acadian Peninsula in northeast New Brunswick and the Moncton region in the southeast. 

How many cases are there?

Forty-eight cases have now been identified.  

How many patients have died?

Six people have died of the mystery disease, according to neurologist Dr. Alier Marrero. The six are included in the 48 cases so far.

Who has been affected?

The disease affects all age groups and affects males and females equally, according to the Public Health memo. About half of the affected individuals are between 50 and 69 years of age.

What are the symptoms?

Symptoms include changes in behaviour, sleep disturbances, unexplained pain, visual hallucinations, co-ordination problems and severe muscle and brain atrophy.

Is it contagious?

Because the cause has not been determined, it is not yet known whether the disease is contagious.

What are the possible causes being researched?

Despite many similarities, tests for Creutzfeldt-Jakob disease have so far ruled out known prion diseases. Scientists are currently looking into the possibility that this is a new variant of a prion disease — or a new disease entirely. Neurologists and scientists suspect the cause might be exposure to an as-yet-undetermined environmental toxin.   

Who's researching it?

The disease is the subject of investigation by an all-Canadian team of neurologists, epidemiologists, scientists, researchers and other experts. Moncton neurologist Dr. Alier Marrero is leading the research in New Brunswick. In Ottawa, senior scientist and Creutzfeldt-Jakob Disease Surveillance System director Michael Coulthart is leading the research.

In April, Horizon Health Network launched a special clinic to assess people experiencing early-onset cognitive decline as cases of an unknown brain disease continue to pop up.

Province's website

The province has launched an information webpage on the mystery neurological disease, which it updates with new information. It is found on the government's gnb.ca website, and is called New Brunswick Cluster of Neurological Syndrome of Unknown Cause.