Jennifer Farber had considered herself to be a healthy individual until 2018, when she contracted a bacterial infection. After she recovered, other unexpected symptoms appeared, which haven’t gone away since.
“I suddenly felt extreme dizziness, fatigue and anxiety,” explains Jennifer. “As time went on, the symptoms got worse. Eventually, I had to take a leave from work as a teacher.”
She tried everything she could, seeking the help of doctors and specialists. Tests turned up negative. There were no medical explanations for her symptoms.
“I was seeing neurologists for the dizziness, eye specialists for my vision and psychiatrists for the anxiety issues,” says Jennifer. “I went from doctor, to doctor, to doctor, to doctor. Everyone was telling me, ‘you’re fine’, when I knew I wasn’t.”
Not ‘faking it’
Jennifer’s situation is not unique, says Dr. Matthew Burke, a cognitive neurologist at Sunnybrook. He focuses on looking at how some medically unexplained symptoms may be the result of abnormal connections within the brain and between the brain and body. Dr. Burke has written about medically unexplained symptoms, also known as functional disorders, in JAMA Neurology.
“During my medical and neurology training, I witnessed first-hand the high volumes of these patients that were falling through the cracks of our healthcare system,” says Dr. Burke. “It’s important for the medical community to realize that these patients are not ‘faking it’ and we should not treat them like they are.”
He adds while there are limited studies on the topic in Canada, reports in the United Kingdom estimate patients with medically unexplained symptoms may represent one third of referrals in fields such as neurology and rheumatology.
Dr. Burke says patients are often told (directly or indirectly) by doctors, “It’s all in your head” and provided little further guidance, which can cause frustration and distress as they continue to feel physical symptoms.
The bridge between body and brain
Medically unexplained symptoms can be classified under many different labels, which adds to confusion in an already very complicated field.
“Every medical specialty has their own functional disorders. In neurology, we use the term functional neurological disorder for patients who present with neurological symptoms that are not compatible with recognized neurological disease. Some examples are weakness, numbness or abnormal movements,” says Dr. Burke. “While in rheumatology they see fibromyalgia; in gastroenterology they see irritable bowel syndrome; in internal medicine, they see chronic fatigue symptom and so on.”
He goes onto explain, “It may be that these patients’ have very similar underlying network dysfunctions in their brains, but we don’t understand exactly what causes the changes in the first place.”
Research has shown that genetic predisposition, adverse childhood experiences, psychological stressors, physical trauma or illness, are just some of the factors that may play a role in the cause of these complex disorders.
Dr. Burke says that new brain imaging techniques are discovering more about the brain regions and connections implicated in these disorders. However, he cautions that we are just scratching the surface and there’s still much research that needs to be done.
Raising awareness for doctors and patients
Over the course of one year, Jennifer continued her search for answers. Tests done by experts continued to rule out diagnoses, but there was still no explanation for her symptoms.
“It was very frustrating, because you know something’s wrong,” says Jennifer. “You know your own body and you know something’s not right.”
Dr. Burke says when patients aren’t supported in this context it may deteriorate patient-physician relationships and strain healthcare system resources.
“Almost everyone in medicine knows that this problem exists but not enough people are talking about it. It’s time to change the culture in the medical community and eliminate the negative connotations associated with these disorders.”
Jennifer admits it wasn’t an easy road to travel as a patient. She had to be tenacious.
“No one’s going to look out for you, but you,” she emphasized. “You have to be your own advocate.”
Her persistence paid off. After seeing many medical specialists, she was ultimately referred to Dr. Burke who found that her symptoms were consistent with persistent postural perceptual dizziness (PPPD) or functional dizziness. Dr. Burke says with PPPD, symptoms may improve when a person is distracted or given more complex tasks, which has also been observed across different functional neurological disorders.
He provided education and counselling around the diagnosis and laid out a clear management plan going forward.
Like other functional disorders cases, the cause of Jennifer’s PPPD still isn’t clear, but she is learning how to manage her PPPD with a combination of multi-disciplinary therapies.
“I was elated,” she says. “In general, I don’t think people are happy to receive any diagnosis, but I was happy. It made sense, the symptoms matched, there was a name, and finally I had an answer.”Go in-depth: Q & A with Dr. Matthew Burke, cognitive neurologist