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A patient with a mysterious brain disease has been told that public health will call him. Months later he’s still waiting
Luc LeBlanc was almost relieved when he was diagnosed as a confirmed case of the mysterious brain disease that has so far afflicted 48 New Brunswickers. After months of worry, frustration and questions, he thought he would finally have answers. Instead, there was only more worry and frustration. And so many other 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 catch it. “I have a lot of questions,” said LeBlanc. “Nothing [has] In an interview with Information Morning Moncton on Thursday, the Dieppe resident, 41, said his ordeal began years ago with recurring “cloudiness”. He had walked into a room, for example, and had forgotten how he got there. It evolved into deeper disorientation, and then panic attacks “just out of fear of everything.” Eventually, he was referred to Moncton neurologist Dr. Alier Marrero and underwent an MRI, blood tests, lumbar puncture and CT scan. January 9. this year, Marrero diagnosed him with a mysterious brain disease, one of a cluster of cases that has since grown to a total of 48 confirmed and suspected cases. So far, the disease has only been found in New Brunswick. Six people died. LeBlanc was told that Public Health would be in contact with a detailed questionnaire “within a few days”. More than four months later, he said he still had not heard from them. “I never got a call, no one contacted me at all, I never got the questionnaire,” he said. “It’s depressing because using all of my symptoms are full fledged. Moncton neurologist Dr. Alier Marrero, seen here in a file photo, is leading the province’s investigation into the brain disease. (Photo Tori Weldon / CBC) Alarmed by the discrepancy in 6 months between appointments, LeBlanc is also troubled by the lack of information shared by the Department of Health and the scarcity of appointments with Marrero, who is now leading the province’s investigation into the case. ” In April, I saw him and was really worried. I did a physical exam and he said it was stabilized, “he said.” He upped my anxiety meds and said we would see each other in six months and do more tests. . “LeBlanc was alarmed.” I said, ‘Well that’s ridiculous, it’s like a ticking time bomb. I could die before these six months.’ “I had to go to a Facebook group to get an idea of what was going on, what the symptoms were, all these questions. – Luc LeBlanc, diagnosed with a mysterious brain disease, Marrero assured him that his symptoms were not as advanced that some other cases, and that some people have been living with this disease “for a long time.” “I had other questions, but he dismissed them a bit” and referred him to his family doctor to discuss the results. physical exam. 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 isn’t until October. Of account, LeBlanc said, “I had to go to a Facebook group to get a feel for what was going on, what the symptoms are, all of those questions.” He was referring to a private Facebook group for patients and families of patients with m mysterious aladie. 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 Marrero’s comment through the Department of Health, which handles his media inquiries, but was told that “the department is unable to comment on specific cases.” “The ministry understands the community is concerned,” spokesman 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 violation of patient privacy.” Luc LeBlanc with his wife, Anick, and their son Simon and daughter Britany. LeBlanc said he was worried if the disease was contagious and if his children would be prone to it. this disease on its own and in the dark. He is asking Public Health to reach out to each of the 48 patients to help allay their fears in any way they can. “To my knowledge, they haven’t spoken to anyone at all,” he said. “I know they’re doing their best, it’s a new disease, but public health has a job to do to educate the public … just to educate them.” LeBlanc acknowledged that Public Health may not know much more, if anything, than it had already made public on the Neurological Disease Information website on the gnb government website. it. But he thinks they still have a responsibility to New Brunswickers who want to receive any kind of feedback. “It’s a big mystery and for me I don’t know how long I’ll be completely sane,” he said. “I would like to know what the next stage of decline is… to put my mind at ease, not to wake up and just feel more and more that I don’t know what to do. Asked why the patients have yet to be contacted by Public Health, spokesman Bruce Macfarlane said the department had completed the questionnaire and was “still in the process of getting all contact details and forms of signed consent of cases under investigation “. “Public Health New Brunswick will be contacting by phone very soon to conduct interviews with people,” he said. CBC News reporters are working diligently to try to find out more about this disease. If you or a family member has any information you would like to share with us, please email [email protected] New Brunswick’s Mysterious Disease: What We Know So Far What is it? Unknown neurological disease with similarities to Creutzfeldt-Jakob disease, a rare and fatal brain disease or prion disease. What is prion disease? Prion disease is a rare disease that involves a misfolded protein in the brain. The abnormal folding of prion proteins causes a chain reaction that destroys neurons and creates holes in the brain. When was it discovered? The first incident occurred retroactively in 2013, after the possible existence of a cluster of diseases was first recognized by the Public Health Agency of Canada’s CJD surveillance system in 2020. In 2019, 11 more cases were identified, including 24 more in 2020 and 12 so far in 2021. When was it made public? An internal March 5 memo from Public Health to health 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 northeastern New Brunswick and in the Moncton area in the southeast. How many cases are there? Forty-eight cases have now been identified. How many patients have died? Six people have died from the mysterious disease, according to neurologist Dr Alier Marrero. All six are included in all 48 cases to date. Who was affected? The disease affects all age groups and affects both men and women equally, according to the public health memo. About half of those affected are between 50 and 69 years old. What are the symptoms? Symptoms include changes in behavior, trouble sleeping, unexplained pain, visual hallucinations, problems with coordination, and severe muscle and brain atrophy. Is it contagious? As the cause has not been determined, it is not yet known whether the disease is contagious. What are the possible causes sought? Despite many similarities, tests for Creutzfeldt-Jakob disease have so far ruled out known prion diseases. Scientists are currently investigating the possibility that this is a new variant of a prion disease – or a new disease entirely. Neurologists and scientists suspect the cause could be exposure to an as yet undetermined environmental toxin. Who is doing the research? The disease is being investigated 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, Michael Coulthart, senior scientist and director of the Creutzfeldt-Jakob disease surveillance system, is leading the research. In April, Horizon Health Network launched a special clinic to assess people who experience early cognitive decline as cases of unknown brain disease continue to emerge. Province website The province has launched an information web page on the mysterious neurological disease, which it is updating with new information. It can be found on the government’s gnb.ca website and is called New Brunswick Neurological Syndrome of Unknown Cause Cluster.