I needed more than Ryan's Rule to save me
FROM February to July last year, Rockhampton mum Nicole Martin lay in a hospital bed paralysed: unable to move her arms and legs.
She was told it was all in her head, and she was slowly starting to believe it.
As the weeks dragged on, she lost more and more mobility - unable to go to the bathroom, shower or feed herself, all the while told by doctors that her condition was caused by stress.
"You start to think you're going a bit crazy," the Queensland Health administration officer said as she wiped away her tears.
It was only after using Ryan's Rule, that she found the answers she was after, but it was a long road getting there.
Mrs Martin had been through a traumatic year prior to the admission: she had lost her grandfather, grandmother and her father.
Her father's death in particular had been a huge shock for the mum of three.
But psychologists and therapy sessions did nothing to get her back on her feet.
The cause behind her debilitating condition was not psychological, but a rare neurological disorder called Guillain-Barré syndrome which is rapid-onset muscle weakness caused by the immune system.
Mrs Martin was admitted to Rockhampton Base Hospital's Emergency Department early February 2018, when a pinched nerve in her shoulder had progressed to her not being able to extend her arms.
On February 6, after meeting with the hospital physiotherapist, she was quickly ushered to the ED and then to the medical ward.
She soon lost complete control over her arms.
Her treating doctor, Dr Noor Al Safi, conferred with the referring hospital, Royal Brisbane and Women's Hospital, and performed various tests on Mrs Martin.
After one week, Dr Al Safi was sure she had Guillain-Barré syndrome, however Royal Brisbane and Women's Hospital rejected the diagnosis, instead diagnosing her with Functional Neurological Disorder.
In the third week, Mrs Martin's mother - a registered nurse - took a stand. She was insistent that her daughter be seen by a specialist or a neurologist.
It was "mother's intuition" - a gut feeling that the doctors' diagnosis of Function Neurological Disorder was wrong.
Mrs Martin had been transferred to the hospital's rehabilitation unit, and was being hoisted in and out of her bed by a sling.
"The Royal Brisbane still refused to see me but I just wanted to be seen by a neurologist," Mrs Martin said.
"In the end, Dr Al Safi said if we could get a private neurologist, he would write a referral.
"Mum found a Dr Johan Kuyler in Bundaberg."
However, on the journey to Bundaberg, Mrs Martin's condition took another turn for the worse and she never made the appointment.
While making a stop on the way at Benaraby, Mrs Martin couldn't get out of the car.
Her brother called over some nearby truckies to help lift her out, but realising that she couldn't stand, they called the ambulance.
Mrs Martin was rushed to Gladstone Hospital - she could no longer use her legs.
On the Tuesday afternoon, she had a virtual appointment via Telehealth with the Royal Brisbane, something she felt was "inappropriate for the first initial appointment".
"They told me it was all in my head, that it was Functional Neurological Disorder, and that I basically had to wait for my brain to click around and do its thing," she said.
"I was bed and wheelchair ridden. They said I just needed to do some intense physio."
She returned to Rockhampton and decided it was time to take matters into her own hands by enacting Ryan's Rule.
"My understanding with Ryan's Rule is that a different team of doctors see you but that didn't happen (at Geriatric and Rehabilitation Services)," she said.
"I saw the same doctor and he said if I couldn't do anything for myself in a fortnight I'd go into a nursing home.
"As a 41-year-old mum, that just did nothing for me.
"My mum then brought up getting me back to Bundaberg to see the neurologist and they put stops in the way and tried to refer us to the rehab team.
"They said they were doing it in my best interests but that would've been getting me to a neurologist."
Eventually, Mrs Martin was permitted to have a neurologist visit her, who immediately diagnosed her with a mild form of Guillain-Barre syndrome.
Finally, they had the answer they needed and they began a five day course of intravenous plasma treatment.
"Three days in, I was able to start doing things for myself," she said.
Mrs Martin stayed at the hospital for another month, able to start rebuilding her muscle mass with her "amazing physio Steve".
Every four weeks, she receives the treatment, which will drop back to once every five weeks in October and once every six weeks in January.
"If I'm showing no forms of deterioration I'll be able to stop all together," she said.
"It's about keeping my independence, getting back to driving and being back at work and doing the things mums do.
"If only the doctors had listened to Dr Al Safi back then, it may not have gotten to this point. It's very disheartening.
"And without my mum pushing, I don't know where I would be."
Rockhampton Hospital's Executive Director Wendy Hoey said she was confident Mrs Martin received "appropriate medical treatment".
"I offer my deepest sympathy for her suffering and would be very happy to meet with her to discuss her concerns in person," Ms Hoey said.
A spokesperson from the Royal Brisbane said all decisions relating to a patient's treatment are made by "highly qualified clinical staff, based on a thorough assessment of the patient's clinical condition and with the goal of delivering the best outcome".
"Royal Brisbane and Women's Hospital (RBWH) has not received a formal complaint from Ms Nicole Martin in relation her diagnosis or treatment," the spokesperson said.
"Any complaint received by RBWH is taken seriously and investigated thoroughly.
"If a member of the community has concerns about the healthcare they receive, we encourage them to contact their local hospital in the first instance.
"We wish Ms Martin well and hope she is receiving appropriate care and treatment."
What is Guillain-Barre syndrome?
- An auto-immune condition in which the person's nerves are attacked by the body's immune defence system
- Results in paralysis and muscular weakness.
- Can be triggered by acute viral or bacterial illnesses, such as respiratory or gastrointestinal infections, 1-3 weeks earlier.
- The rare illness affects between 2-8 out of 100,000 people.
- Symptoms include muscle weakness and paralysis, numbness, muscle aches, pains or cramps, odd skin sensations, blurred vision, dizziness and breathing problems.