Two Malaysians with MS and a caregiver share their experiences about living with MS.

Asiah Binti Abdul Wahab and Lai Juin Wen share their life stories on Living with multiple sclerosis (MS)


Asiah Binti Abdul Wahab – MS Patient

Asiah was officially diagnosed with multiple sclerosis (MS) in 2003. Her first symptom presented in 1998 when she was 18 years old. She experienced blurred vision in her left eye, which went away after several days.

In 2003, when she was 23 years old, she felt the familiar symptom in her right eye. She first sought traditional treatment. However, when there was no improvement after one month, Asiah went to Hospital Kuala Lumpur where a neurologist confirmed her diagnosis of MS.

Asiah got married in 2003. Although her doctor advised her not to get pregnant, she got pregnant shortly after her marriage. During her pregnancy, she suffered severe relapses – her mobility was affected, she had poor coordination and she fell easily. Her condition deteriorated during her second pregnancy, resulting in her needing assistance to walk and involuntary tremors of her left hand. Her daily activities are hindered and she is not able to look after her two children due to her disability. She has also lost her social life.

Unfortunately, Asiah’s own family and that of her husband’s are unable to understand or accept her condition. Her husband divorced her this year and she is not allowed to see her two children. Despite her painful life experiences and the challenges she faces getting through the day, Asiah understands that life has to go on. She currently lives with her mother and sister.

Going on a disease modifying treatment (since 2008) has stabilised Asiah’s MS. Asiah also feels that she has benefited tremendously from having access to an MS nurse – not only does she have the assurance of guidance on treatment and disease-related matters, but she has the invaluable emotional support that comes with having a friend who understands what she is going through.

Today, her greatest desire is to be independent again. She is actively involved in the MS Society’s activities as it provides her with a social outlet. Asiah hopes that with greater awareness of MS as a disease can help MS patients avoid having to go through similar life experiences.


Lai Juin Wen – MS Patient

 Lai Juin Wen is 32 years of age. He was officially diagnosed with multiple sclerosis (MS) in 2004. His first symptom presented when he was 26. He experienced the “jamming” of both his eyeballs and was not able to move them for three months. At that point, he consulted an ophthalmologist and was told that the cause was due to the brain and was sent for a CT Scan. As the CT Scan report was inconclusive, Juin Wen needed to go for further investigation – a spinal procedure called Lumbar Puncture. After waiting six months for the Lumbar Puncture report, his diagnosis of MS was confirmed.

Juin Wen’s subsequent MS attacks affected both his eyes and his vision deteriorated further.

He also suffers from frequent headaches, giddiness and insomnia. Due to his deteriorating vision, he was no longer able to continue his work in a photocopy shop as that required good vision to perform.

He started treatment with Interferon-beta injection in December 2008. Initially, he suffered side effects from the treatment in the form of severe headaches and giddiness.

However, he persevered with treatment as he believed that it would be of benefit. Juin Wen’s perseverance paid off – his relapses as well as the side effects reduced within the year. In December 2009, his MRI report showed that his treatment was effective in reducing the size of his MS lesions. This helped reassure him that his MS is under control.

Juin Wen is grateful for his mother’s love as she has looked after him since he was sick. He hopes that other MS patients seek treatment early, and continue treatment, so that they will still able to live well and healthy.


Shashi – Caregiver for an MS Patient

 Shashi is the caregiver for her brother, Anil Kumar, who lives with multiple sclerosis (MS).

She is 52 and has been caring for her brother since he was diagnosed with MS at the age of 24 in 1986, after going through a challenging journey to diagnosis.

Due to disease progression, Anil Kumar became immobile at the age of 31. He is now 48 years old. Shashi is deeply committed to looking after her brother and is “on call” at all times. Not only has she turned the home into a safe environment to suit Anil Kumar’s disability, but as his primary caregiver, she is sensitive to changes in his condition and she manages all his appointments and ensures that he gets the necessary treatment by shuttling him to various doctors for different disabilities (i.e. Orthopedic, Urology, Neurology).

Shashi believes that family support is very important. She would never give up looking after her brother despite the challenges and will continue to support and be there for him.

CHALLENGES VOL3, ISSUE3 2010  (Challenges Magazine is a journalism skills training project for persons with disabilities started in 2007)