At first glance, the bespectacled Nur Atiqah Samsudin strikes you as someone youthful and bubbly.
She breaks easily into a smile and shines with positivity.
Unbeknownst to many, behind the glasses is a woman who has been living with multiple sclerosis (MS) for 14 years.
MS is an unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and the body.
Its cause is unknown, although scientists believe a combination of environmental and genetic factors contribute to the risk of developing this chronic disease.
An estimated 2.8 million people worldwide have MS.
In Malaysia, MS strikes around two to three individuals in every 100,000.
Can’t control the eyes
For Nur Atiqah, the nightmare began when she was 18.
Like most teenagers, she enjoyed a carefree life.
She had completed her secondary schooling and was looking forward to pursuing a TESL (Teaching English as a Second Language) course in Penang.
Nur Atiqah loves reading and her ambition was to become an English teacher. Her dream: to write a mystery novel.
The only child from Taiping, Perak, was riding a motorbike with a friend when she met with an accident.
“A car was going at a really high speed and hit me from behind.
“My friend got thrown off, but I was dragged from the side to the centre of the road before the driver managed to brake.
“The next thing I knew, I was in hospital with a fractured right femur and a broken clavicle.
“I was hospitalised for two weeks, and because the operating theatre was shut down at that time, I had to wait 10 days before having surgery to insert a femur-locking plate,” recalls the 32-year-old.
She was recovering well after the operation, and it wasn’t until a few months later that Nur Atiqah noticed her eyes would start moving up and down and side-to side rapidly and uncontrollably (involuntary eye movements or nystagmus is one of the symptoms of MS).
“I had discomfort looking at things and when I went to the hospital for a check-up, they kept telling me ‘Miss, your eyes are moving’.
“They repeatedly told me that every time I went, and after a few visits, I told them, ‘Thank you, I know my eyes are moving’ and sought treatment elsewhere.
“At the same time, I was also experiencing numbness in my left leg, and would stumble and fall or hit against the wall. I didn’t know what was wrong,” she shares.
Her mum, who was a nurse, took Nur Atiqah to another hospital where she underwent magnetic resonance imaging (MRI).
“I was told nothing was wrong with my eyes and the specialist asked me to do further tests at a private hospital because he suspected MS. I had no idea what it was,” she recalls.
She had a lumbar puncture done to remove a sample of cerebrospinal fluid, which was sent to Australia for analysis.
A few weeks later, Nur Atiqah was confirmed to be suffering from MS.
Her parents were devastated and her world came crashing down.
Striking in the prime of life
According to Hospital Kuala Lumpur consultant neurologist Dr Shanthi Viswanathan, MS is often diagnosed between the ages of 20 and 40, and is the leading cause of non-traumatic disability in young adults.
This debilitating disease is five times more common in women than in men, and usually strikes at a time when the person is studying, entering the workforce or just starting a family.
“MS is not curable and the goal of the treatment is to accelerate the patient’s recovery (from their symptoms) and prevent further progression.
“The disease is highly unpredictable, and rarely are two patients’ symptoms alike.
“Those with severe MS may progress rapidly to irreversible or total disability,” she says.
There are four types of MS, but the most common type, affecting 85% of patients, is relapsing-remitting multiple sclerosis (RMS).
Dr Shanthi shares that people with RMS suffer acute episodic worsening (relapses) of their neurological symptoms, followed by temporary remissions.
An episode can last for hours or days, and the recovery process would take a couple of weeks or months, depending on the symptoms.
These include fatigue, numbness and tingling, muscle spasms, stiffness and weakness, mobility issues, vision impairment, speech difficulties, vertigo, pain (especially in the back), bladder or bowel problems, and difficulty swallowing.
“I have witnessed people with MS symptoms unknowingly equate the symptoms with other common diseases.
“My advice is to seek help from physicians and neurologists when having symptoms suggestive of MS to properly clarify the diagnosis and rule out other neuro-immunological conditions that may mimic MS.
“Get the right diagnosis and opt for early treatment to manage the condition and symptoms,” she advises.
Exploring the city lights
Nur Atiqah is among the majority who have RMS and was started on treatment immediately after her diagnosis.
“At first I was broken-hearted, as I was about to begin a new phase of life and it was dashed.
“My mother was so worried about sending me elsewhere to study because I cannot control some of my movements.
“I know my parents were trying to be strong for me as I cannot handle stress, and have trouble with my emotions and sleeping.
“Along with my extended family and friends, they gave me the support and courage to move on with my life.
“Slowly, I began to accept what was happening to me,” she shares.
Initially, the treatment worked and Nur Atiqah was able to walk again, although she would relapse every three or four months.
As her condition stabilised, she mustered enough courage to apply for jobs.
She got a job at the spa in the Malaysia Airlines (MAS) lounge at Kuala Lumpur International Airport (KLIA) and moved to live in the big city.
She was 21 then.
Life was good and she even managed to go to Japan by herself, staying with friends to get inspiration for her debut novel.
She reveals: “My great-grandmother is Japanese, but that’s not why I went to Japan.
“I chose Kyoto as the main province for my novel because I wanted to dedicate the book to my idols, the J-pop band Arashi.
“They’ve been inspiring me in almost all of my writing with their music and performances.
“I always remember these statements from band members Sakurai Sho: ‘Write it as a dream and read it as a goal’, and Matsumoto Jun: ‘Don’t give up achieving your dream’.”
Eventually, life in Kuala Lumpur started to get challenging after the MH370 flight went missing in 2014.
“They started to fire people, and I told them, ‘Please don’t fire me, I’ll resign’ because I didn’t want a black mark in my record.
“So I switched jobs and worked at the front desk at another spa in KLIA,” she says.
Very few people knew Nur Atiqah had MS because she didn’t want to be discriminated against.
She says: “Soon my colleagues began to realise I couldn’t walk as fast as them because I had to walk from one gate to the opposite gate in a short span of time.
“My fatigue worsened and I couldn’t cope with the stress.
“That’s when I decided KL is not for me – sometimes, I wouldn’t even have enough money for the month – so I returned to Taiping.
“My mother was glad to have me back because I used to work midnight shifts in KL and she would constantly call to check if I had gotten home safely!”
She continued to have relapses; that, along with the severe side effects she was suffering, made the doctors change her medications a few times before finding the right fit for her.
From four relapses a year, it has now reduced to one or two.
Over the years, drugs have improved and the latest one for adults with RMS that has been approved in Malaysia is cladribine, a short-course oral therapy that has four years of efficacy with a maximum of 20 days oral treatment over two years.
Earlier this year (2021), Nur Atiqah, who has plenty of food allergies, had a relapse and was admitted to have her treatment administered intravenously.
Sadly, a patient next to her contracted Covid-19 and so did she.
“Thankfully, my symptoms were mild and I was sent to another place to free up the beds in the ward,” she says.
Fight for your dream
Despite all the setbacks, her childhood dream finally materialised in a 400-page book.
Under the pseudonym Scarlet Storm, her vampire fiction Bound: History was released in 2015.
Fans are asking her for a sequel and Nut Atiqah is slowly working on it.
She admits shyly: “There’s also a request from a Japanese director to turn my book into a television series, so I’m currently writing the script.”
However, she says: “Until today, my eyes are still moving in circles, and if I get really dizzy, I close my eyes. If I’m relapsing, the nystagmus is really fast – I cannot see anyone in front of me.
“The numbness will start at my feet and move up my leg.
“Then I know it’s time to head to the hospital.”
After 14 years, her condition is deteriorating and Nur Atiqah now depends on a walking stick.
That hasn’t dampened her enthusiasm to live so she ventured into a small business selling cakes and pocket perfumes.
Her customers are mostly her mum’s friends, nurses and hospital staff she has met in the course of her treatment.
When business is good, she bakes up to 30 cakes a day!
Her speciality is butter and moist chocolate cakes.
She admits: “At times, I am a broken woman, but I try to be positive as whatever happens, I still have to live with MS.
“I cannot compare myself to normal people – this is me.
“If I break down, I write poetry to pour out my emotions or I talk to a therapist – it helps.
“MS will take away half your life, but don’t give up; fight for what you want to do and cry to let it out.”
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