Functional Neurological Disorder has doctors and researchers baffled
"I woke up one morning and I couldn't sit up. I was in this terrible fog; my head was spinning and I tried to get out of bed and I couldn't make my legs move."
Merran Dawson is describing the start of a frightening health crisis.
At her worst, she couldn't walk, struggled to speak and was suffering multiple seizures.
For more than a year, doctors were baffled.
"I had lots of different tests," she told 7.30.
"I even had a test for syphilis and a test for copper poisoning. And a lumbar puncture to see if it was MS, which it wasn't.
"I started to think, I am just crazy. Maybe it's something in my head."
Eventually, Ms Dawson was given a name for her condition — Functional Neurological Disorder (FND).
Put simply, her brain's hardware was normal, but the software wasn't working properly.
'One of medicine's oldest and most challenging mysteries'
Professor Richard Kanaan, a psychiatrist from Austin Health, has been studying FND for 20 years and specialises in treating patients with the condition.
"It really has been one of medicine's oldest and most challenging mysteries," he told 7.30.
"A lot of the greatest minds in neurology and psychiatry have tried to grapple with explaining this."
Neurologist Rowena Mobbs explained that while the condition was the second-most common reason for people to see a neurologist, after headache, FND was not well known or understood, even among doctors.
"These patients are fearful, they don't know where to go, they don't know who to see, they often get the run-around and they re-present to emergency time and time again," she told 7.30.
"We must understand that it's not under the patient's control, it's a subconscious phenomenon. It's a functional disturbance within the brain rather than a structural disease."
While patients show symptoms similar to a range of neurological problems, such as MS or stroke, tests reveal no biological evidence.
"They might be paralysed, they might have fits, they might have a shaking movement that they can't control, they might be blind," Professor Kanaan said.
"But when you look for the brain damage that might be causing this, you can't find it and instead we understand it as a disorder of the way the brain is working.
"It can be extremely debilitating. Many patients will be wheelchair-bound, or bedbound and may have so many fits in a day that they can really do little else."
'There is nothing wrong with you, you are attention seeking'
Kate Gill was in her 30s, fit, and involved in competitive line dancing.
"One day I had a bit of a headache, a neck pain, so I lay down and when I tried to get up I couldn't move, I couldn't work out how to put one foot in front of the other," she told 7.30.
As she searched for answers, she faced scepticism and frustration, with suggestions that she was a malingerer, or mad.
"For me it was a very sudden onset. An incredibly frightening experience," Ms Gill said.
"Doctors do the traditional tests and say there is nothing wrong with you, you are putting this on, you are attention seeking.
"If there's nothing wrong with you, there's no treatment, so you can't get better."
An occupational therapist, Ms Gill has left-side weakness.
She uses a walker at home and an electric wheelchair to go further afield.
After her harrowing experience before diagnosis, she's set up a charity called FND Australia to support those with the condition and help educate others.
The causes of FND are complex. In some cases, trauma may be a trigger, in others there is no obvious cause.
"It could be trauma at work, a difficult situation with a partner or boss. People are often made vulnerable by a difficult early childhood," Professor Kanaan said.
"This is a medical disorder that is profoundly serious, disabling, and it is not as a result of people pretending to be sick."
'We need to tackle it head on'
Ms Dawson is now undergoing treatment with a physiotherapist, speech therapist and neurologist, and is improving.
She can walk small distances, but still needs a wheelchair for longer outings. And she is learning to control the involuntary jerking movements.
Dr Mobbs believes there needs to be a boost in funding for FND.
"We need to tackle it head on. We need good outpatient clinics with a coordinated multidisciplinary team. That will lead to good management, better cost-cutting for the community and a better outcome for patients," Dr Mobbs said.
"We have clinics for diabetes, MS, stroke and memory, why do we not have clinics for such a common disorder in neurology?"
Article from ABC News