The unexpected long-term neurological sequelae of the coronavirus

In the fall, when he contracted a mild case of COVID-19, Samar Khan was hoping to recover and return to his vibrant old life in Chicago. After all, he was only 25 and a healthy person.

But weeks later, he explained, “he started to appear a strange constellation of symptoms“.

Khan had blurry vision surrounded by strange halos. I had buzzing in the ears and everything started to smell of cigarettes or disinfectant. Her leg started to tingle and her hands trembled when she put eyeliner in her eyes.

He also experienced a “very intense mental fog”, He said. Trying to focus on a call from his financial services job, Khan felt like he had just come out of anesthesia. And during a political debate she had with her husband, Zayd Hayani, “I couldn’t remember what he was trying to say or where he stood,” she said.

At year’s end, Khan had been referred to a practice of neurological symptoms related to COVID-19 at Northwestern Memorial Hospital in Chicago, which assesses and advises hundreds of people across the country with similar issues.

The practice, which sees around 60 new patients per month, in person and via telemedicine, released the first study focusing on long-term neurological symptoms in people who have never had a case of COVID-19 so apparently physical that it requires hospitalization, as happened with Khan.

The study of 100 patients from 21 states, published March 23 in The Annals of Clinical and Translational Neurology, found that 85% of them had four or more neurological problems such as mental confusion, headache, tingling, muscle pain and dizziness.

“We find that people who are very functional individuals, accustomed to multitasking constantly at the same time and who are in the fullness of their capacities, suddenly everything costs themSaid Dr Igor J. Koralnik, head of neuro-infectious diseases and global neurology at Northwestern Medicine, who heads the practice and is the lead author of the study.

The report, in which the average age of patients was 43, highlights the new fact that for many people, Extended COVID-19 it may be worse than the initial outbreaks of contagion. The reason for this is the complex and persistent series of symptoms they experience.

This month, a study of California electronic medical records found that nearly a third of people suffer from prolonged symptoms of COVID-19 – such as shortness of breath, cough, and abdominal pain – had no manifestation of disease in the first ten days after testing positive for coronavirus. Surveys by patient groups have also revealed that many COVID-19 survivors with long-term symptoms have never been hospitalized for the disease.

In the Northwestern study, many symptoms fluctuated or persisted for months. Most improved over time, but the variation was great.

“Some people are 95% recovered after two months; while others, after nine months, have only recovered 10%, ”Koralnik said. Patients estimated that five months after contracting the virus, only 64% felt cured.

Across the country, doctors treating people with post-COVID-19 neurological symptoms say the study results reflect what they saw.

“We have to take this seriously,” said Dr. Kathleen Bell, director of the department of physical medicine and rehabilitation at the University of Texas Southwestern Medical Center, who was not involved in the new study.

“We can let people get worse and things get complicated or we can find that we have a crisis“.

Bell and Koralnik said many symptoms resembled those of people who had concussion or head trauma or that they had experienced “brain fog” after receiving chemotherapy.

In the case of COVID-19, Bell said, experts believe the symptoms are the result of “An inflammatory reaction to the virus” which can affect both the brain and the rest of the body. And, according to Bell, it makes sense that some people experience multiple neurological symptoms at the same time or in clusters, because “the brain has limited space and there is a lot of overlap” in the regions responsible for different brain functions.

“If you have inflammatory disorders, you may well experience cognitive and emotional effects. It is very difficult to have a neurological problem without having several, ”he explained.

Dr Allison P. Navis, a neuro-infectious disease specialist at Mount Sinai Hospital Health System in New York City, who was not involved in the study, noted that about 75% of his 200 post-COVID patients problems encountered such as “depression, anxiety, irritability or certain mood symptoms”.

Study participants the vast majority were white and 70% were female. Navis and others said the lack of diversity likely reflected the demographics of people who were able to seek treatment relatively early in the pandemic and not the full spectrum of those affected by post-COVID neurological symptoms.

“Especially in New York City, most of the patients who have fallen ill with COVID are people of color and Medicaid patients, and these are not the patients you see in the post-COVID center,” Navis said. I think we need to know a bit more about what’s going on with these disparities: is there just a lack of access or are symptoms excluded in people of color or is it something else? “.

Koralnik revealed that in the Northwestern study, due to the difficulty of testing for the coronavirus early in the pandemic, only half of the participants had tested positive for the coronavirusBut all had the first physical symptoms of COVID-19. The study found very little difference between those who tested positive and those who did not. Koralnik noted that those who tested negative tended to contact the office about a month later during their illness than those who tested positive, perhaps because some had spent weeks being tested or trying. to get other doctors to look after their problems.

Khan was among the attendees who tested negative for the coronavirus, but later said she tested positive for antibodies, showing she was infected.

Another study participant, Eddie Palacios (50), a commercial real estate agent living in Naperville, a Chicago suburb, tested positive for coronavirus in the fall and only experienced a headache and loss of taste and smell. But “a month later, things have changed”, He said.

“I cleaned the drains and I forgot where I wasI forgot what I was doing on the roof, “Palacios said. When he remembered, he added, the idea of ​​doing” something as simple as climbing a ladder is suddenly become a mountain “.

He also had complications at work. “My clients gave me information like an access code or an address and I couldn’t remember it,” he said.

During the first meeting at the Northwest office, Palacios said: “I did the cognitive tests and I did not succeed. On another visit, he did another battery of tests. “It didn’t go very well for me either,” he said.

Palacios was referred to a Chicago cognitive rehabilitation program that has a long history of helping patients develop strategies to manage and improve cognitive, organizational, and memory difficulties. But it wasn’t, he said, because “I completely forgot.” Now you plan to go.

In the Northwestern study, 43% of patients had depression before having COVID-19, 16% had previous autoimmune diseases, and the same percentage of patients had lung disease or problems with insomnia.

Experts cautioned that the study being relatively small, these pre-existing disorders may or may not be representative of all long-term patients.

“We are all seeing very small parts of the elephant in terms of the group that suffered from prolonged COVID,” Bell said. “Some of us see the tail; others the trunk.”

In addition to neurological symptoms, 85% of patients suffered tired and almost half had difficulty in breathing. Some also had chest pain, gastrointestinal symptoms, or varying heart rates or blood pressure. Almost half of the participants suffered depression or anxiety.

Khan said he had “palpitations if I stood up to open the curtains.” The cardiologist said he was the fifth previously healthy youngster to come to the office that week. At first, the fatigue was so severe that taking a couple of trips around her 56 square meter apartment exhausted her for the rest of the day. In addition, he said he has “mood swings very intense which does not seem to me “.

“As I wake up in this body every day, hope sometimes seems a little dangerous to me,” said Khan, who will soon be entering the cognitive rehabilitation program. “I have to ask myself: will I recover or will I just see how to live with my new brain?”

By Pam Belluck for The New York Times. Translation: Elisa Carnelli.

NS