Nur Atiqah Samsudin talks about the challenges in living with multiple sclerosis.
AT 19, Nur Atiqah Samsudin had plans for her future. Her options included becoming a writer, a dream she had had since childhood.
Unfortunately, Nur Atiqah, who is now 30, had to put her plans on hold after she began suffering from unexplained symptoms. Her pupils started to move rapidly from side to side, making it difficult to see. Her poor vision caused her to collide into objects, trip and even fall while walking.
Thinking that something was wrong with her eyes, Nur Atiqah’s mother Kasma Mohamed Noor took her daughter to an ophthalmologist. It was revealed that nothing was wrong with her eyesight but with her optic nerve.
Nur Atiqah was advised to see a neurologist for further tests. After two magnetic resonance imaging (MRI) scans, followed by a spinal fluid analysis, she was diagnosed with multiple sclerosis (MS). The chronic inflammatory disease was attacking her central nervous system, which led to her symptoms.
Nur Atiqah was told that the damage may lead to vision loss, hearing loss and even paralysis. To make it worse, MS is incurable although disease-modifying treatments can reduce the symptoms, delay disability, and reduce progression of the disease.
“I was depressed and at a loss as I was about to continue my studies. I was immobile and had to use a wheelchair and a cane to walk. I felt that I could no longer achieve my dreams and I was devastated. I was stressed both physically and emotionally,” says Nur Atiqah.
It is hard for Kasma, 63, and her husband Samsudin Abdullah, 65, to watch their only child struggle with her condition. However, they are determined to support Nur Atiqah’s fight against the disease.
“At home she mostly stays in her room when she is experiencing symptoms. But whenever she feels better, I ask her to help me around the house. My husband and I drive her to the hospital for her treatments or wherever she wants to go. I don’t want to restrict her movements even though she has to use a wheelchair,” says Kasma.
DISEASE-MODIFYING TREATMENTS
Nur Atiqah’s condition is described as relapsing-remitting MS. Since her diagnosis in 2009, she has been on four types of medication. From 2010 to 2016, she was on two types of injection to reduce the attacks and ease her symptoms.
In 2017, she was on oral tablets which had serious side effects on her liver. Nur Atiqah suffered from elevated liver enzymes, nausea and hot flushes. Due to the side effects, she had to stop treatment.
Last year, the treatment was changed to prescription infusion medicine which helped decrease her symptoms. She has gone through five cycles and is expected to complete another three cycles by year-end.
Nur Atiqah is now able to walk slowly without a cane although her vision is still blurry as the damage to her optic nerves are irreversible. Despite her limitations, she is determined to put her plans of becoming a writer back on track.
In 2014, she travelled solo to Osaka and Kyoto in Japan for inspiration for her first book. Using the pseudonym Scarlet Storm, her self-published fiction Bound: HIStory was released in 2015.
“I found it difficult to deal with my condition at first because I was worried about my future. Living with MS for the past 11 years has not been easy but I have learnt to be strong and believe in myself. I have to continue with my plan because there is no harm in trying.
“The support of my parents, friends, doctors and therapists has also helped me overcome my fear. The treatments, diet and exercise have also helped me regain a level of control, confidence and quality of life. I am now working on my second book, which is a fiction. Maybe one day I will write about my life as a sufferer of MS.”
Hospital Kuala Lumpur consultant neurologist Dr Shanti Viswanathan says although there is no cure for MS, early diagnosis and treatment are vital to avoid relapse and disability progression that could significantly impact a patient’s quality of life.
She says once the disease has moved into a progressive stage, the symptoms would worsen and treatments will become challenging.
“Some patients will tell you that this year they can walk 500 metres without any problem. However, within the next two to three years, they may be able to complete the walk but there would be problems. In the next five to six years, they may not even walk 100 metres.
“To avoid this, it is important to go for early diagnosis and treatment. With the advancements in medicine, we can now delay progression of the disease. Getting the right diagnosis is the core of the treatment so that you can give the right drug to the right patient.”
BE AWARE OF SYMPTOMS
Dr Shanti says awareness on MS among the public and doctors is necessary to ensure early detection and treatment. As MS is more common in women between 20 and 30 years old, they should be aware of any persistent symptoms. These include blurry or double vision, pain or numbness in the leg and walking unsteadily.
She says if the symptoms last for more than 24 hours, they should visit their primary care physician.
“Physicians should listen to a patient’s complaint and investigate his or her medical history. Refer the patient to a neurologist to confirm the diagnosis. Many MS patients are misdiagnosed as some of the symptoms are vague or similar to other conditions. Because of this, it is important for the patient to monitor and describe the types and patterns of symptoms in detail to the doctor or neurologist.
“There are various tests that can be done such as an MRI scan, lumbar puncture and blood tests.”
Dr Shanti says one of the challenges in treating MS is that the symptoms are unpredictable and vary greatly from patient to patient. Some patients may have a mild attack this year and another one three years later. Some may have multiple attacks within the same year but the attacks may be mild, while others may have multiple attacks and become disabled soon after.
“Due to the unpredictable symptoms, treatments also depend on the patient’s type of MS and stage of the disease. The disease modifying treatments are tailored to the patient’s need.
“However, patients need to stay on treatment as well as make changes to their lifestyle by taking a healthy diet and exercise. MS won’t kill you because it is not a fatal disease. However, without treatment the symptoms can get worse and cause patients to be bedridden. This can lead to complications such as bed sores, urinary tract infections and chest infections which can kill them,” says Dr Shanti.
In conjunction with World MS Day, Sanofi has launched the World vs MS initiative to raise awareness on the condition. It is also to empower patients with a better quality of life through giving the right treatment options and education.