Mystery neurological disease prompts Horizon to launch special clinic

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

This week the government of New Brunswick also launched a web page dedicated to providing updates on the atypical disease that's infected 48 people in the province and killed six.

The first case was retroactively identified from 2015, and the disease has been found in patients as young as 18 and as old as 86.

There is still no diagnosis for the condition, but Creutzfeldt-Jakob disease and other prion diseases have been ruled out. Moncton neurologist Dr. Alier Marrero said this is a new disease, and investigators are looking into the possibility of it being caused by an environmental toxin.

"The leading hypothesis is a neurotoxin acquired from the environment. But the hypotheses are open to other possibilities," he said. "We have not really ruled out anything yet."

He said he understands that news of this disease and the deaths it caused are worrisome to residents, but he hopes this clinic will ease some anxiety.

"I know this creates anxiety, it might even create fear, but fear is not a good friend," he said. "We're working with hope."

He said researchers are working together provincially, across the country and around the globe.

"We're going through science to work to understand, to get to the root of the problem and to offer ways of hope to our patients and their family."

According to a Horizon news release, the special neurodegenerative disorder clinic is now seeing patients but is only accepting people with referrals from their primary-care providers.

Doctors at the clinic are expected to see 16 to 20 patients a week.

Dr. Jason MacDonald is one of the people working at the clinic. He said the focus on quick and early-onset cognitive decline will hopefully capture everyone suffering from this disease.

"Up until now we've been lacking a streamlined approach," he said. "That is our hope, is to provide a centralized location for these patients to really call home, and that's important for many reasons, so we can keep accurate statistics and so that we have a database to facilitate research."

Dr. Edouard Hendriks, Horizon's vice-president of medical, academic and research affairs, said that given the sense of urgency surrounding this disease, the clinic will initially be prioritizing patients suspected of having it.

"The scope of the clinic may evolve over time to include patients diagnosed with other forms of these diseases, such as Alzheimer's disease, for example," he said. "Those patients, in the interim, will continue to be referred to and treated by other services already available within the health care system, as has been the case for quite some time."

Cases of the new disease have been clustered in the Moncton area and Acadian Peninsula, and Marrero previously said it's not genetic.

The clinic is located at the Moncton Hospital, the release said, where doctors will be assessing patients they suspect have this new disease. The goal is to diagnose and intervene before the symptoms become too advanced.

The clinic will have a social worker, neuropsychologist, registered nurse and administrative staff, the release said.

Horizon also wants to use the clinic to research all other neurodegenerative diseases, and find ways to improve the quality of life of patients and families and lower the rate of hospitalization.

Symptoms of the disease include:

• Memory problems.

• Muscle spasms.

• Balance issues, difficulty walking or falls.

• Blurred vision or visual hallucinations.

• Unexplained, significant weight loss.

• Behaviour changes.

• Pain in the upper or lower limbs.

The province's dedicated web page says Public Health is working with several provincial and federal agencies to investigate the disease cluster, including the New Brunswick Department of Agriculture, Aquaculture and Fisheries and the Public Health Agency of Canada.