Terriline Porelle has always been an outdoorsy person, hiking, camping and even snorkelling at any opportunity.
Living in New Brunswick, Canada, she describes herself as a typical “Canadian country girl” who loves to stay active.
But for the last 18 months of her life, Terriline, who works as a receptionist, has been blighted by a condition that makes her feel "like an old lady all the time" and causes her to bump into things while she's walking.
The 33-year-old’s once active lifestyle has drastically changed as the condition has left her confused, fatigued and unable to carry out basic tasks.
Terriline’s problems began in the summer of 2020 when she noticed a sharp pain in her leg at work.
"It was like someone had stabbed me with a pen. It almost felt like an electric shock - like cramp, but not really,” she tells The Mirror.
At first, Terriline says she brushed off the pain and presumed it would go away. But for the next few weeks, she says it persisted on and off a few times a day.
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“Later, I felt the same spasm which started with that muscle, but it spread around my limbs, to my forearms, face, feet, shoulders and ribs,” she explains.
“I was always twitching, every day, but I got used to it.”
After about a month of twitches all over her body, Terriline visited a massage therapist thinking she might have trapped nerves - but the massage didn’t make a difference.
And while the twitching continued, Terriline began to notice new symptoms which started to worry her.
“Once in a while I’d have balance and coordination issues. I’d be sitting down and feel like I was falling backwards,” she says.
She also started bumping into doors and furniture, lost weight and struggled to sleep.
“It was a bit like a headrush but I was sitting down, then boom. I also noticed I was having a hard time remembering people’s names and focusing at work became harder.”
After Googling her symptoms, Terriline thought she might be suffering from multiple sclerosis (MS), but after visiting her family GP and having tests there were no signs of the illness.
While Terriline was still without answers her symptoms were gradually worsening.
She says: “There were a couple of red flags, like I couldn’t write the letter ‘Q’ at work. It just didn’t look right, no matter how I wrote it.
“I couldn’t figure out where the hot water was in my house. One day I went to use the microwave, something I use all the time, and I couldn’t do it.”
In December 2020 Terriline’s vision became blurry and distorted. After visiting an optometrist, she was told the muscles that make your eyes focus were spasming too.
Soon Terriline had a worrying suspicion, and clubbed in with her family to pay for a private MRI scan to find out if it was correct.
“I thought I might have a brain tumour and I thought time was of the essence,” she explains.
But just like with tests she’d done previously, the MRI results came back clear.
Still, Terriline’s symptoms persisted - and eventually she was referred to Dr Alier Marrero, based in her home province of New Brunswick.
“We did the first appointment on Zoom, it was a Q and A type thing. He told me that for a young woman of my age, these symptoms aren’t normal,” she recalls.
From the first consultation, Dr Marrero conducted a series of blood tests and neurological tests on Terriline, ruling out conditions like motor neurone disease and Parkinson’s.
Eventually, one test on Terriline’s brain revealed something was happening - but the explanation for this was unclear.
The test revealed decreased cerebral perfusion, which is linked to cognitive decline and an increased risk of dementia.
But although the test proved Terriline’s symptoms were real, it offered no explanation of why she was suffering.
Then Dr Marrero explained to Terriline he’d seen her symptoms in several patients before - all in the area of New Brunswick and all with an unknown cause.
There was a “cluster” of 48 cases in the province of people suffering from a mysterious neurological illness that appeared to be degenerative in most cases.
According to CBC News, the “syndrome” was first identified in March 2021 in a memo from the chief medical officer of health which read: "Preliminary investigation conducted in late 2019/early 2020 determined this to be a distinct atypical neurological syndrome."
The memo, which was leaked last year to Radio Canada, stated some people as young as 18 were suffering from the mysterious condition, and of the 48 cases originally identified, nine had died.
In an interview with Radio Canada last October, Dr Marrero, who isn't involved said he’s seeing an increasing number of young patients coming to him with symptoms similar to Terriline.
He said: "It's totally unexpected to have any of this at this young age and this many people in a small province and in small areas of a small province."
Another patient identified in the cluster is 20-year-old Gabrielle Cormier, who dropped out of university as her symptoms started to worsen.
After first suffering from symptoms in 2019, she is now in a wheelchair after her balance totally declined.
She told CBC: “I forgot three letters of the alphabet,” adding it felt like she was “borderline getting dementia.”
Public health officials and neurologists in New Brunswick (not including Dr Marrero) are carrying out an investigation into the mysterious illness and its causes.
As part of the investigation, 34 out of the 48 patients identified were asked to fill out a survey to determine if there was an environmental source of the syndrome - asking about food the patients have eaten and what they do for recreation.
New Brunswick health minister Dorothy Shephard said the results showed there was no reason to believe there was an environmental cause of the mysterious illness.
She added there was even reason to question whether or not there is an unknown brain illness in the province at all.
But for Terriline, the symptoms are very real and she’s frustrated by the lack of progress into researching the condition.
After being reviewed by doctors working with public health officials, one hypothesis for her symptoms is that she has post-traumatic stress disorder (PTSD).
“I laughed in her face,” Terriline says. “PTSD from what? I’m not depressed, I’m in a new relationship and I don’t have any other symptoms of PTSD.”
She added she’s concerned the symptoms are being dismissed as mental health problems in young patients and Alzheimer’s in older patients.
“It’s a slap in the face,” she says.
Eighteen months after first noticing symptoms, Terriline is thankful they haven’t worsened too much.
“The physical symptoms haven’t got worse but I’ve noticed a decline in my memory and focus. My boyfriend has noticed a bit of a decline too.
“The other day I asked him to put the laundry in the garage. I meant to ask him to put it in the dryer but I thought ‘garage’ was the right word.
“I also forgot the name of the kitchen recently. I just pointed to it and said, ‘that room where we do the dishes’.”
While the cluster of 48 wait to find out if public health bodies’ investigations into the illness give them answers, they have connected with each other in a Facebook group where they share their symptoms and provide support to each other. They're also trying to raise awareness of their symptoms around the world.
And where some in public health have questioned Dr Marrero’s identification of the mysterious illness, his patients continue to support him.
“We have 100% faith in Dr Marrero,” Terriline says. “He’s our hero.”
She added: “I’m trying to keep positive but it’s hard. There’s a lot of stress but I consider myself lucky compared to others in the group.
“At the same time, we just have no information. It’s scary.”
