Living with myasthenia gravis, a rare but manageable condition

Free Malaysia Today

13-05-2025

53-year-old Alina Ali began suffering from symptoms of myasthenia gravis in 2010, but was only diagnosed with the rare condition in 2016. (Bernama pic)
KUALA LUMPUR : It began suddenly in 2010, when secondary-school teacher Alina Ali inexplicably began feeling fatigued, her voice growing hoarse. Chalking it up to work-related stress, she visited her doctor but found nothing abnormal.
Some of her colleagues asked why she 'seemed lazier lately'. Others attributed her condition to 'black magic' or 'disturbance by a spiritual entity', leaving Alina feeling unsettled.
She consulted specialists from various fields, from eye doctors to psychiatrists, and even sought the help of traditional healers – but none of them could give her a clear answer.
By the end of 2015, her symptoms had worsened, with severe body weakness. Still, she figured her exhaustion was from caring for her children after her husband passed away suddenly from a heart attack that August.
Sometime the following year, she began to experience a drooping of both upper eyelids. Alina was referred to a neurologist at Hospital Serdang in Selangor and, after undergoing several tests, was diagnosed with myasthenia gravis (MG), a rare autoimmune disease.
'I didn't know what to feel – relieved because I finally knew the cause, or afraid because I had never even heard of the disease before,' the now 53-year-old told Bernama.
She was prescribed the medication pyridostigmine and steroid prednisolone. Despite numerous side effects – including diarrhoea, watery eyes, increased saliva production, weight gain, spikes in blood sugar, narrow blood vessels that rupture easily, and proneness to skin, blood and lung infections – she was determined to stick with her treatment.
Alina, who retired from teaching in 2021, is now active in the MG community, sharing her experiences and offering support to others. While MG patients do not fully recover, the condition is manageable, and Alina is committed to raising public awareness about the disease.
According to consultant neurologist Dr Rabani Remli, MG is a chronic autoimmune disease caused by disruptions in the transmission of nerve impulses to the muscles. As a result, the muscles become weak when a person performs repeated physical movements.
The disease is neither contagious nor inherited. It is often misunderstood as a psychological issue or mistaken for other conditions such as stroke or eye-muscle disorders.
Symptoms of MG include body weakness, especially in the arms and thighs, making it hard for patients to climb stairs or carry out daily activities. (Envato Elements pic)
Rabani explained that MG is difficult to diagnose as its symptoms can be confusing and can vary. Patients often present with drooping eyelids or double vision, difficulty speaking clearly, and trouble swallowing. Some may experience muscle weakness in the arms and thighs, making it hard for them to climb stairs or carry out daily activities.
Although there is no official data on the prevalence of MG in Malaysia, previous studies have shown that MG among Malaysians displays clinical characteristics similar to those in other countries. Women are more frequently diagnosed at a younger age, usually between 20 and 30, while men are usually diagnosed later, in their 60s.
There are two classifications of MG: ocular, which only involves the eye muscles, or generalised, which involves muscle weakness in other parts of the body. 'Identifying the MG category is important for determining the treatment approach,' Rabani said.
'Detecting MG requires a careful approach due to its unclear and inconsistent early symptoms. Taking a detailed patient history is key to record a pattern known as 'fatiguability' – a hallmark of MG: symptoms that worsen with physical activity or repeated muscle use, but improve after rest.'
Neurological examinations are necessary, including asking the patient to raise their eyelids and move their arms and legs. Blood tests are conducted to detect antibodies, while further evaluation may include nerve-conduction tests or a chest CT scan to detect any tumour or enlargement of the thymus gland – located behind the breastbone between the lungs – which is often associated with MG.
'If there is swelling in the thymus, we will refer the patient for thymus-gland surgery. Thymus-gland tumours are a major cause of this disease,' Rabani noted.
Although MG cannot be completely cured, it can be controlled with proper treatment. Medications such as pyridostigmine work by enhancing the transmission of nerve signals to muscles, temporarily reducing muscle weakness. Effects may vary from person to person.
For more serious cases, patients are prescribed immunosuppressive treatments such as steroids, azathioprine or mycophenolate mofetil, which can help reduce antibody production. These treatments, however, require close monitoring as each can have short- and long-term side effects.
Neurologist Dr Rabani Remli says one of the main challenges in managing MG in Malaysia is the low level of awareness, not only among the public but also among general medical practitioners. (Rabani Remli pic)
In more complicated cases or during an 'MG crisis', emergency treatments such as intravenous immunoglobulin or plasma exchange are used to neutralise and eliminate antibodies more quickly. These treatments have also been found to be very effective during critical phases or before surgery.
'If a patient is found to have a tumour in the thymus gland, they will be advised to undergo a thymectomy, which is the surgical removal of the thymus. Patients who undergo this surgery, especially younger ones, usually show better symptom control in the long term.'
Alongside medical treatment, patients need to better control their stress and get sufficient rest. Avoiding certain medications that can trigger MG is also crucial.
Furthermore, psychological effects pose a major challenge for MG patients, Rabani said: some of her patients suffer from depression because they are misunderstood by others who brand them as lazy, spoiled, or having psychological issues.
'The loss of control over body functions and the difficulty in planning daily activities are major causes of depression as patients don't know when their body will fail to function. This makes it hard for them to work or live a normal social life,' Rabani explained.
The main challenge in managing MG in Malaysia is the low level of awareness, not only among the public but also among general medical practitioners. As such, Rabani hopes support groups like the Malaysian Rare Disorders Society and other NGOs will continue to shed light on MG, while assisting patients and their families.