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Health

The battle to function when the brain gets its signals crossed

Many people suffering from the little-known Functional Neurological Disorder spend years on the medical merry-go-round. Alexandra Alvaro follows the journey of one young sufferer for diagnosis, recognition and recovery.

The battle to function when the brain gets its signals crossed

Photo by John Barkiple/Unsplash

Words by Alexandra Alvaro
 

Amelia Tang was receiving psychiatric treatment for a generalised anxiety disorder when they* started to experience frequent falls.

It would happen as they circulated the psychiatric ward, slowly and almost gently. Their legs would suddenly become weak, causing them to somehow find the ground.

“I would just drop to the floor. I would land in a cross-legged position and I’d think ‘that’s weird’ and then I’d get up.”

At the time, Amelia was 15-years-old, and so mentally unwell that the falling didn’t cause too much alarm – they were too busy working to heal in other ways.

“I started getting paralysed, in my whole body a few times”: Amelia Tang. Photo by Yuris Alhumaydy/Unsplash

“I started getting paralysed, in my whole body a few times”: Amelia Tang. Photo by Yuris Alhumaydy/Unsplash

But then other symptoms began. Long seizures, several times a day, which presented like tonic-clonic seizures, characterised by an arched back, eyes rolling to the back of the head and jerking limbs.

“I would be in the classroom doing a worksheet and suddenly I’d start seizing – I’d slide off my chair and onto the ground.

“I started getting paralysed, in my whole body a few times.”

It wasn’t until seven years later, that a doctor used the words Functional Neurological Disorder (FND) to describe Amelia’s symptoms.

FND occurs when the brain fails to send and receive signals accurately. Experts say one-in-five patients who present to a neurologist with functional symptoms have FND. It’s the second most common reason for a neurologist to see a patient after a migraine.

But even though it’s common, patients like Amelia, who is now 24-years-old, spend years on the medical merry-go-round, struggling to receive a diagnosis or treatment due to stigma and a lack of medical expertise.

Without treatment, life can become incredibly difficult. Sufferers can lose control of the use of their hands, forget how to write or how to walk, experience blindness or seizures that last for hours at a time. They can be left bedridden for weeks due to fatigue. Sometimes they experience one or two of these symptoms at once, sometimes several at a time.

Dr Alexander Lehn is a neurologist at the Mater Centre for Neurosciences at the Mater Hospital in Brisbane. It’s home to the first FND treatment centre in Australia, which opened in 2015.

He says patients can be severely debilitated by their wide-ranging symptoms.

“I often come up with a list of 10, 15, 20 symptoms that they might have. They’ll say, ‘Some days I can’t see, sometimes my brain is all foggy, sometimes I can’t swallow properly’,” he says.

Patients often come to him after years of confusion and frustration, having been passed from psychologist to neurologist, back to the psychologist. (Below, find a link to a Q&A discussion with Dr Lehn for FND Hope International Awareness Day 2018.)

Dr Lehn says his patients have spent years believing their FND was chronic migraines, epileptic seizures, several mini-strokes or even Parkinson’s. Some have been investing in treatments for illnesses they don’t have.

It leaves them with little choice but to live with their unexplainable symptoms.

“The mean duration (for diagnosis) is many, many years. Which is awful because chronicity of symptoms is a very bad prognostic factor for patient outcomes.”

The longer people are left without medical help and rehabilitation, the more ingrained the neural pathways causing their symptoms become.

“If you imagine you have those abnormal pathways that you develop when you have functional symptoms, when the brain trains those pathways again and again for decades, they’re much harder to undo, rather than when it’s still fresh,” he says.

“I see people usually many years, sometimes after decades from when they first started getting symptoms. And you can still make a difference for those people, but it’s difficult.”

A lack of public understanding surrounding FND is just one reason patients aren’t getting the help they need.

Katherine Gill is the director of FND Hope Australia, a global advocacy group that provides support for people with FND. A sufferer of FND herself, she says people in her community are falling through the cracks.

“Our network is growing every day. Every day we are approached by people in crisis,” she says.

“We’re dealing with people who have had to have suicide intervention. People have had to sell up their houses. Elderly people who are couch-surfing. So the strain it leads to is really large.”

Only a handful of specialists in Australia know how to treat FND, which can be managed through physiotherapy and other methods. Ms Gill says there are fewer than 10 experts nationwide.

The first diagnosis Amelia received for neurological symptoms was “conversion disorder”. The condition is based on the theory that emotional and physical trauma can be translated into very real neurological symptoms like the ones Amelia experiences.

It’s a term that still exists within the Diagnostic and Statistical Manual of Mental Disorders. For a little while, this diagnosis made sense for Amelia. They had been in and out of psychiatric care for their formative years. “I was practically raised by psychiatrists,” they say.

But it’s also a term many FND sufferers reject and are falsely diagnosed with.

“The term conversion disorder comes from the Freudian term in that people are repressing emotional trauma,” says Ms Gill. “It doesn’t fit everyone’s FND.

“There are lots of people with FND that have no history of trauma or mental illness. The trigger could be over exerting themselves, accidents and injury. There’s a large percentage of people without the underlying trauma.”

Photo by Stefano Pollio/Unsplash

Photo by Stefano Pollio/Unsplash

Because of its proximity to mental illness, and its classification as a psychiatric disease, conversion disorder is widely stigmatised.

That stigma still manages to have an impact on the treatment FND patients receive. Some doctors still believe that patients are in control of their symptoms when they rush to emergency or see a specialist.

“A lot of people have not moved forward, which makes it very hard on patients. You need physical rehab and training and you just don’t get that within mental health care,” she says.

Amelia frequently comes across doctors who believe their symptoms are all in their head. They have, on many occasions, been left begging to be treated. During each admission, they are having to justify to nurses and medical professionals why they need in-patient rehabilitation.

The cruel irony is that the symptoms are in their head, just not in the way doctors think they are.

A recent stint in emergency due to a bad flare-up left Amelia feeling less than confident in doctors’ ability to treat them.

At the time, they were unable to verbally communicate or chew, and bathroom trips involved sliding along the floor. They weren’t left with a nurse call button in emergency.

“I just wanted to go to the toilet, I wasn’t thinking about anything else. I got really fatigued by doing that. I couldn’t keep my body up any longer and I just kind of lay down,” they say.

“The nurse said, ‘you need to stand up the floor’s dirty’. I think when I didn’t get up, more and more people gathered. They kept yelling out, ‘you need to stand up’.”

Amelia was left distressed by the lack of compassion they experienced that day. “I was frustrated they didn’t actually believe me. They thought I was just on the floor by choice and I didn’t feel like moving.”

They spent the rest of the day too scared to be left alone with medical staff.

“I was terrified. I was just terrified. I was clinging to my mum like a baby.”

Dr Lehn says he’s used to hearing from patients who have been accused of feigning symptoms.

One reason this accusation is common is because symptoms are so varied and unpredictable. He says medical professionals also fail to come to terms with how inconsistent FND symptoms are.

“Some people on a good day function perfectly well. But on a bad day they’re terribly incapacitated,” he says

Amelia says this inconsistency is one of the most frustrating parts of living with FND.

“One day my legs could be paralysed and I could literally be dragging myself to a bathroom, and dragging myself up the steps. But then I can have days where I can stand up as soon as I wake up,” they say.

At its worst though, it’s completely debilitating. The seizures and tremors can last for six hours at a time. Amelia might be lucky to shower twice a week during a flare-up. Gathering the energy to leave their bed more than a couple times a day can be impossible.

“Even a sentence or a few words can take energy to produce and that can impact on me for the next day. Every little movement that I make can take it out of me completely, it’s like I’ve run three kilometres without training,”

The lack of predictability in their life makes it had to interact with the outside world, or plan for anything at all.

But the inconsistent symptoms FND sufferers experience is not the only thing medical professionals aren’t understanding. The brain of an FND patient appears normal on scans – there’s a problem with the software, not the hardware.

Dr Lehn says there’s a more deeply rooted problem that needs to be tackled within modern medicine: its widespread inability to diagnose illnesses that can’t be seen or proven via testing.

“One of the problems of the last decade is how we’ve developed things that are very mechanical and technology driven. What was lost were good clinical skills and the ability to make diagnoses just based on testimony and clinical history and then coming up with a diagnosis,” he says.

“Nowadays if you can’t see things on a scan, people are like, ‘Well that’s not proper, I need to see this on a scan’. They want to see something.”

Dr Lehn says that the most achievable change that can be made for now is education. He’s given up on some of the older neurologists, who he says are stuck in an old way of thinking. But the interest he sees from early career doctors is inspiring.

“I truly think if we double, triple quadruple our clinic, it’s not going to help. What we need to do is overall improve care for patients with FND. And that starts with GP training,  junior doctor training in hospitals and emergency departments.”

It’s something that gives Amelia hope, too.

“There are definitely doctors who believe you and there are allied health professionals who will be receptive to patients with FND. I have hope that things will change.”

They recently gained NDIS support, after many years of being too ill to go through the process. For them, it’s a sign that their disability is starting to be recognised by others.

“My life is going to start,” they say.

“It’s as if you were strapped down, given all your basic needs, but you can’t socialise, and then suddenly are given the tools to live. It’s indescribable.”

*Some people prefer to be described with a non-binary pronoun such as ‘they’ rather than a gendered pronoun. For more information and guidelines on inclusive language, the Victorian Government has this website.   

For more information and support networks for FND, visit the Sane Australia website here.

 

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