When the brain deceives the body

When Stefan Morisset showed up at the CHUM clinic in December 2022, the young man was only a shadow of himself. He barely spoke or moved as his pain, particularly in his neck and jaw, tortured him. He spent his days bedridden in the dark. “The light, the noise… Everything was an attack. It was hell. I survived every day,” he says.

It was a six-week treatment in the functional neurological disorders (TNF) program at the University of Montreal Hospital Center (CHUM) that literally allowed Mr. Morisset, 30, to “relive”: “It unlocked my life. It must be said: my story has a happy ending. »

However, in 2022, the professional photographer no longer believed in it. The first symptoms of his illness appeared around 2016 in the form of repetitive movements and abnormal position of one foot. Then, in 2018, it was the turn of his right hand to be affected. More seriously, to the point that he was no longer able to write. He was diagnosed with dystonia, a disorder characterized by involuntary muscle contractions.

Two years later, during the pandemic, he started experiencing jaw pain. And in 2022, Mr. Morisset’s symptoms escalated: tremors, incapacitating neck pain, burning sensation in his arms. “I couldn’t move,” he said.

He has become sensitive to noise to the point of having to wear earplugs almost all the time. The light was so harsh on him that he could no longer look at a screen.

Mr. Morisset consulted doctors. His physical examinations were normal. “Everyone told me: it’s mental. We can’t help you. But I was suffering. » In July, after some medical wandering, he received a diagnosis of TNF at the CHUM.

A disease with multiple symptoms

Neurologist and head of the TNF program at the CHUM, D^D Arline-Aude Bérubé explains that these disorders are manifested by different symptoms, including dizziness, dystonia, tremors, dizziness, difficulty swallowing, etc. Some people become unable to walk or climb steps. For others, we are talking about occasional attacks of convulsions which are not linked to epilepsy. In each case, no physical problem is involved. “On the neurological examination, there are signs that something is not working well, but the nervous system is structurally intact,” says the D^D Berube.

At this stage, many patients are told, like Mr. Morisset, that their symptoms are “in their head.” A situation which does not help in any way, explains the D^D Bérubé, “because the symptoms, the pain are very real”.

For the D^D Bérubé, TNFs are “a kind of hybrid between physical and psychiatric illness”. A bit like the platypus, which is halfway between birds and mammals. The danger for these patients is medical wandering. “They are always told what they don’t have, but never what they do have,” she says.

According to the model on which the CHUM TNF program is based, the human brain operates in “predictive mode” and not reactive. “He is constantly predicting the sensation to come,” summarizes the D^D Berube.

She gives the example of a parent who hears that there are lice in their child’s class. His head often begins to itch instantly. “The itch is real, but it’s not coming from the scalp. It comes from the brain calculating that this is the feeling it should feel based on the context,” she says.

TNF is involuntary and manifests with real symptoms “generated by a brain prediction error.” Regardless of our gender or age, the risk of developing TNF is the same. No predisposing or precipitating factor is involved. “It’s not a weakness of mind. Anyone can do that,” emphasizes Dr. Bérubé. Only 15% of patients followed at the TNF clinic at the CHUM also have a mental health disorder, which is less than in the general population. Other diseases can also accompany TNF, but not necessarily. Why does a person develop TNF? Hard to say. “It’s multifactorial. A bit like cancer,” says Dr. Bérubé.

What to do with these patients who are, in a way, victims of their brain? In many cases, simply getting a diagnosis of TNF and understanding what affects them can help correct the situation. But for others, the TNF clinic at the CHUM subjects them to a physical rehabilitation program of 8 to 12 weeks where we “deprogram the anticipatory phenomenon of the brain which has become automated and which generates the symptoms” of TNF, explains the D^D Berube. A process which is far from easy and which creates discomfort for the patient. “Before each session, I cried,” says Mr. Morisset.