When freelance writer Nur Atiqah Samsudin was diagnosed with multiple sclerosis (MS) , she had no idea what the autoimmune disease was all about.
The nightmare began with an accident when she was 19. Nur Atiqah was riding a motorbike when a car hit her. She was thrown off and sustained a leg injury.
She was hospitalised and recovered, but it wasn’t until four months later that she started experiencing nystagmus, a vision problem that caused her eyes to flick side to side uncontrollably.
Nur Atiqah also found it difficult to walk and her balance was affected. She thought these symptoms were due to the accident but it was not.
Doctors diagnosed her with MS. She was dumbfounded because she had never heard of the disease.
MS is a chronic autoimmune, inflammatory disease of the central nervous system. Basically, the immune system (that is supposed to defend and protect the body) starts attacking the protective sheath (myelin) that covers the nerve fibres in the brain and spinal cord.
These attacks lead to inflammation and as time goes by, produce a plaque of scar tissue in the central nervous system, which is also known as sclerosis. This plaque makes it hard for the nerves to conduct electrical impulses, causing communication problems between the brain and the rest of the body. Eventually, the disease can cause permanent damage or deterioration of the nerves.
When the optical nerves are attacked, patients experience blurring in the eyes. If they experience weakness on the left side of the body, it means the right side of their brain is being attacked. Additionally, other MS symptoms include numbness in one or more limbs, electric shock sensation which occur with certain neck movements, speech problems, urine retention and sexual dysfunction.
Researchers have yet to be able to pinpoint why these attacks take place.
Studies show that this disease is also associated with disability in terms of cognition and memory. There are some patients who display symptoms of anxiety and adjustment disorders. Left untreated, it can lead to psychosis.
The most common type of MS is relapsing-remitting, which means patients would have episodes of attacks. An episode can last for hours or days, and the recovery process would take a couple of weeks or months, depending on the symptoms.
According to Hospital Kuala Lumpur consultant neurologist, Dr Shanthi Viswanathan, each patient has a different presentation of symptoms. For example, patient A might have an attack, then goes into remission for two to three years before another attack occurs.
Meanwhile, patient B may suffer multiple attacks in a year, but these attacks could be very mild.
Patient C, on the other hand, might become disabled as soon as his first and second attack happens.
“Initially, the immune system is able to recover from multiple attacks. However, as time passes, the body doesn’t have enough reserves to repair itself and inflammation is replaced by axonal loss or neurodegeneration (degeneration of the nervous system, especially of neurons in the brain).
“Consequently, the attacks will become lesser but the symptoms won’t go away. In this case, patients have reached a more progressive state, eventually leading to brain degeneration, mental impairment and physical disability,” she explains.
Getting the right diagnosis
MS is a rare disease affecting 2.3 million people worldwide. In Malaysia, the number of patients reported to be living with MS is only 767 with the majority coming from the Malay community (59.4%), Indian (20.5%) and Chinese (16.6%), followed by indigenous groups (3.5%).
However, Dr Shanthi says: “These numbers are underestimated because the awareness hasn’t been built up and patients are not coming in to seek treatment. Many MS patients are misdiagnosed as some of the signs can be vague or similar to other conditions. It is important to monitor and describe the types and patterns of symptoms in detail to your doctor or neurologist.”
One of the challenges in treating multiple sclerosis is getting the right diagnosis.
“Ninety per cent of MS patients experience extreme fatigue – it’s as if someone has put a needle into their bodies and sucked all the energy from them. Even if they’ve gotten enough rest, they will still feel completely wasted in the morning. And unfortunately, some of their family members ignore their complaints because they think it’s normal,” says Dr Shanti.
Some patients also think there is no need to see a doctor when their symptoms disappear. They will only come forward when the disease has left some detrimental effects in their lives, that is when they go into the progressive relapsing phase.
By then, it is often too late to seek help.
“Some might have mistaken their symptoms for other common diseases such as stroke. These are among the factors that delay patients from seeking treatment,” adds Dr Shanthi.
Multiple sclerosis affects more women than men with a ratio of 5:1. This debilitating disease usually strikes those in the 19 to 39 age group, at a time when young women are still studying, entering the workforce or just starting a family.
“If a patient shows persistent symptoms that a young person shouldn’t have and it takes days to get better – for example, weakness in legs – that should trigger a red flag,” points out Dr Shanthi.
Early diagnosis helps in the majority of multiple sclerosis patients as they can be accorded the proper medical treatment quickly. Don’t ignore possible symptoms and signs because when MS goes into the progressive phase, it’s more challenging to start treatment.
To educate patients as well as caregivers on how to better manage and understand multiple sclerosis, Sanofi Genzyme has come up with a patient leaflet, which will be distributed to hospitals treating MS patients.
The leaflet doesn’t only contain infographics, but acts as a checklist for the public to identify whether they have signs related to the disease. If a person ticks four out of five symptoms, they should make their way to see a doctor.
Living a better life
Over 20 years ago, there was no treatment available in Malaysia to help MS patients. But now, with advances in medical technology. patients have a chance to seek a better life.
Now 30, Nur Atiqah has been living with relapsing-remitting MS for over 11 years. From having to use a walking stick to move around the house, these days she can walk freely without any assistance when she has no attacks.
Looking back, Nur Atiqah says she has come a long way since accepting her condition. Prior to the accident, she may have exhibited some multiple sclerosis symptoms (she would frequently experience fainting spells and dizziness) but didn’t pay much attention to them.
“I was still young, had just come out of secondary school and had so much more to accomplish. My life was about to start, and I was devastated at first. I experienced plenty of physical discomfort and emotional stress. Fortunately, I have my family and friends as my support system.
“Living with MS isn’t easy, but there are a number of treatment options available that will help you get back on your feet. With the help of my neurologist, I’m currently on disease modifying treatments (DMT) and this has helped me regain a level of control, confidence and quality of life,” says Nur Atiqah, whose diagnosis inspired her to pursue a career as an author.
In 2015, she published a romantic fiction novel titled Bound: History, using the pseudonym Scarlet Storm.
Dr Shanthi, who has been treating Nur Atiqah from the beginning, says it was fortunate that she started treatment quite early.
“After 20 years, 80% of MS patients will go into progressive or progressive relapsing phase. With DMT, it can delay the progression while some won’t even reach the phase,” adds the neurologist, who is also the vice president of the Malaysian Society of Neurosciences.
Thus, awareness and early diagnosis play a significant role for multiple sclerosis patients to live a better life. So, learn about the disease, pay attention to worrying signs and start seeking medical help. Early.