Signs of trouble: A magnetic resonance imaging scan shows multiple sclerosis in a patient’s brain. Multiple circular stains, indicated by the white coloring on the periphery of the patient’s brain, show the sclerosis (pathological tissue hardening). (Courtesy of Riwanti Estiasari/Cipto Mangunkusumo Hospital)

Multiple sclerosis is an incurable autoimmune disease. Treatments, however, can increase a patient’s quality of life.

Despite feeling the symptoms of multiple sclerosis (MS) for years, 57-year-old Elisabeth Sianturi was not diagnosed with the autoimmune disease right away.

Elisabeth said she started to sense the symptoms a few years ago. She was occasionally struck by vertigo, or she would suddenly fall down while strolling along in a shopping mall.

At the age of 49, these symptoms worsened and they severely disturbed her ability to move her legs and disrupted her body’s motoric and coordination functions, so much so that she found it very difficult to walk in a straight line and maintain her balance. She added that at that time, she started to experience erratic mood swings and memory problems.

“I’ve been treated in several local hospitals. I’ve undergone lots of medical tests including blood, lung, eye, magnetic resonance imaging [MRI] and many others. At that time, the doctors, unfortunately, couldn’t come up with a clear diagnosis, only assumptions of toxoplasmosis [an parasitic infection caused by cats], among others,” she told The Jakarta Post in a recent interview.

A top executive at a multinational company, Elisabeth said she was finally diagnosed with MS in 2009 by a neurologist at the Mount Elizabeth Hospital in Singapore.

MS allows the body’s immune system to attack the myelin (fatty white substance that surrounds the axon, or neuron cell body, of some nerve cells) located in the brain and spinal cord, instead of protecting the body from antigens. The condition is incurable, with a number of treatments available to relieve symptoms and delay the progression of the disease.

Together we are strong: Multiple sclerosis patients from Jakarta; Bogor and Palembang come together to support each other during an MS awareness event at the Bandung Indah Plaza shopping center in West Java in May. Aside from suffering from motoric problems, some also have visual disturbances due to MS. (Courtesy of the Indonesian Multiple Sclerosis Foundation/Kanya Puspokusumo)

According to UK-based organization MS Trust, an estimated 2.5 million people suffer from MS in the world. Unfortunately, such data is not available in Indonesia. Global research, however, suggests that the proportion of women with MS is increasing and that roughly between two and three women have MS for every man with the condition.

The disease typically affects those within the age range of 20 to 40, although rare cases can also be found among children and those above 40.

The symptoms include weakness, tingling, numbness and blurred vision. Other signs include muscle stiffness, thinking problems and urinary problems.

MS is known as a disease with a thousand faces as its symptoms and progression may take many forms, making it difficult to identify.

“MS can be difficult to diagnose, especially in the early phase, because for most people, it doesn’t exhibit distinctive symptoms,” said Riwanti Estiasari, a neurologist at the Cipto Mangunkusumo Hospital in Central Jakarta.

She said the symptoms could differ depending on which part of the brain was attacked by the disease.

Similar difficulties in securing a diagnosis were also experienced by Kanya Puspokusumo, a 35-year-old French, Japanese and English translator.

Kanya said she started to experience symptoms such as tingling sensations and weak leg muscles from the time she attended college in the early 1990s. The pivotal point came in 1997, when she was paralyzed for a week and had to be hospitalized in Bandung, West Java.

She underwent lumbar puncture and computerized tomography scan (CT scan) tests, but no conclusive diagnosis was arrived at. The doctor said she might have suffered a transient ischemic attack, or mini stroke.

Kanya was finally diagnosed with MS in May 2001, almost three years after she suffered from temporary paralysis, at the Shizuoka Saiseikai General Hospital in Shizuoka, Japan,

Both Elisabeth and Kanya said that the disease had wreaked havoc on their professional and personal lives. Elisabeth, for example, was almost fired from her work. She was ultimately demoted from her position.

Risk factors

Risk factors for MS are still inconclusive. Researchers, however, have pointed to certain antecedents, like vitamin D deficiency, smoking habits as well as psychological stress. Genetic factors can also come into play, as in the case with lupus, another autoimmune disease.

“Infectious diseases, including those caused by the Epstein Barr virus [EBV] and herpes virus during adolescence and adulthood, can also trigger the disease,” Yuda Turana, a neurologist with the Atma Jaya Catholic University School of Medicine, wrote in an email interview.

Riwanti said because no particular risk factors had been identified, there were no methods people could use to prevent the disease.

Diagnosis, progression and treatment

However, Riwanti believes that early diagnosis is essential to MS treatment. Although medications cannot cure the condition, they can halt the disease’s progression, which may cause paralysis.

Briefly put, the medical treatments are divided into two: those taken only during relapses, and those for continual treatments.

Conditions that can trigger a relapse include infections, physical exhaustion and psychological stress. Usually, patients will be injected with medicines like Metilprednisolon during relapses.

For recurrent treatments, patients can take medications like Interferon Beta 1A and Fingolimod, which are available in Indonesia. These two drugs can be taken orally or through intravenous injection. Side effects include flu-like symptoms such as fever, headache as well as muscle pain and stiffness.

“We will monitor a patient’s response to the medication, which usually improves their motoric, perceptual and cognitive ability. The medication also helps to decrease relapse frequency and mitigate brain damage. At certain points, unfortunately, the disease can no longer respond to any medical treatment,” Riwanti explained.

Other therapeutic methods, like physiotherapy, are also recommended. Social support from friends and family is also essential to improving a patient’s quality of life.

“My quality of life has improved since I joined a clinic in Bandung, West Java, which incorporates mindful meditation,” Elisabeth said, adding that the meditation classes had helped her reduce psychological stress. She also added that she followed a specific diet to improve her condition.

Thanks to these additional treatments, Elisabeth has improved her motoric conditions, and now after retirement she is able to be active in various activities. Meanwhile, Kanya is able to resume her activities as a translator while acting as the chairwoman of the Indonesian Multiple Sclerosis Foundation, a support and awareness group for Indonesians with MS.

The group was established in 2008 and was made official by the Law and Human Rights Ministry in April 2015. It is supported by the UK-based Multiple Sclerosis International Federation. For more information, visit multiplesclerosis.or.id.