Multiple sclerosis, or MS, is a chronic autoimmune condition which affects the central nervous system – the body attacks the nerve cells, making them unable to communicate between the brain and the rest of the body. (Photo: iStock/CandyRetriever)
American female celebrities Christina Applegate, Selma Blair and Jamie-Lynn Sigler all suffer from a debilitating autoimmune disease called multiple sclerosis, whose symptoms include fatigue, pain, muscle weakness and numbness, and sleep problems. CNA Women finds out what the situation among Singapore women is like.
Multiple sclerosis, or MS, is a chronic autoimmune condition which affects the central nervous system – the body attacks the nerve cells, making them unable to communicate between the brain and the rest of the body. (Photo: iStock/CandyRetriever)
My friend Jamie Bailey woke up in May last year with pins and needles in her feet. A fitness enthusiast and an anaesthetic nurse whose work involves hours on her feet in surgery, Jamie found walking to be “strange”. When she experienced numbness from her abdomen, extending to both of her legs, and she found it difficult to breathe, she rushed herself into the hospital.
There, doctors did an MRI and a lumbar puncture (or a spinal tap). The neurologist discovered there were eight lesions in her brain and several along her spinal cord.
Her doctor told her she had multiple sclerosis and started her on a course of steroids. Upon further tests, she was also prescribed a combination of medication which involved infusions, injections and oral medications that help to manage her symptoms.
Bailey, 39, who lives in the United States, said staying active, being consistent with her treatments and medication, and managing her stress are key to keeping her flare ups at bay.
“Some days are hard with the fatigue and saying no to an engagement has been a huge help,” she said.
WHAT IS MULTIPLE SCLEROSIS?
Multiple sclerosis, or MS, is a chronic autoimmune condition which affects the central nervous system. According to the Johns Hopkins Medicine website, the body’s immune system attacks the myelin, or the outer shell of the nerve cells.
Without this sheath, one’s nerves are unable to communicate between the brain and the rest of the body. It is a long-lasting disease that can affect the brain, spinal cord, and the optic nerves in the eyes.
Sclerosis causes inflammation and the lesions that are caused by inflamed scar tissue make it difficult for the brain to send signals to the rest of the body.
The term multiple sclerosis refers to the distinct areas of scar tissue, scientifically called sclerosis, or plaques and lesions. They occur from the body’s attack of myelin.
These lesions differ in size – some being as small as a pin and others, as large as a golf ball, according to the US National Institutes of Health.
The exact cause of multiple sclerosis is unknown. It is not contagious or hereditary, but genetic factors like having a defective gene which controls immune reactions can increase one’s risk of developing MS. Having a parent or a sibling who was diagnosed with multiple sclerosis gives you a slightly higher chance of being diagnosed too.
Past infections, which can cause an autoimmune response where the body’s defence system attacks healthy cells in the body, can cause MS as the body attacks the nerve cells and damages the myelin instead.
Several studies have shown that the disease tends to affect people who live at a higher latitude, such as North America and Europe. The closer you are to the equator, or the more exposure you have to sunlight and vitamin D, the lower your risk of developing MS.
One report also found that multiple sclerosis has been found to affect those of Caucasian and African-American ethnicities more than others.
There are over 2.3 million MS sufferers worldwide but it is relatively uncommon in Singapore, affecting approximately seven in every 100,000. According to SingHealth, there are over 300 diagnosed cases here.
The symptoms vary widely from person to person. They also change in severity through time – sometimes even daily.
The most common symptom is fatigue. Almost 80 per cent of MS sufferers state that they suffer from fatigue which affects their ability to function optimally.
Depending on where damage from the disease occurs, neurologic symptoms may affect areas of muscle control, balance, movement coordination, vision and even speech.
Nerve damage symptoms:
These symptoms often cause difficulty walking and may result in frequent tripping.
Vision problems:
Vision is one of the common symptoms and while it can be mostly managed with treatment and medication, sometimes in severe cases, it can cause blindness.
Speech issues or dysarthria:
Other common multiple sclerosis symptoms include:
HOW IS MULTIPLE SCLEROSIS DIAGNOSED?
MS is commonly diagnosed in people between their 20s and 40s, although the symptoms can develop at any age. The condition is not easy to diagnose, with many reporting more than one symptom.
Dr Amy Quek, Senior Consultant in Neurology at the National University Hospital who specialises in autoimmune neurology, said: “Based on local data, the average age of diagnosis for MS in Singapore is 31 years.”
Usually, a neurologist will carry out several tests to diagnose the condition, following a thorough discussion on one’s clinical or medical history.
In Singapore, the tests include:
THE FOUR TYPES OF MULTIPLE SCLEROSIS
These four distinct types of MS are what medical professionals use when diagnosing and treating the disease. They are determined by how much the disease has progressed in each patient.
Clinically isolated syndrome (CIS): This is the first episode of symptoms and lasts for at least 24 hours. Most people with CIS are likely to have a second episode and thereafter, a diagnosis of the next type of MS, which is relapsing-remitting multiple sclerosis (RRMS).
Relapsing-remitting MS (RRMS): The type of MS that Bailey has and the most common, making up 95 per cent of all MS diagnosis. It shows clearly defined new or increasing neurologic symptoms. These new symptoms are called “relapses” and are followed by partial or complete recovery (or remission).
RRMS is often diagnosed earlier in the course of the disease and mostly in people in their 20s and 30s. It also occurs more in women than in men.
Secondary progressive MS (SPMS): This is the second stage of MS diagnosis and often a progression of RRMS where the disease becomes more severe, without improvement in the symptoms or any remissions. SPMS symptoms show more nerve damage, which indicates steady progression of the disease.
Without treatment, 50 per cent of people with RRMS get SPMS within 10 years while almost 90 per cent of RRMS cases develop into SPSS in 25 years.
Primary progressive MS (PPMS): The rarest of MS cases, where symptoms accumulate, and neurologic functions and ability worsen. This type of MS accounts for 10 to 15 per cent of all MS diagnoses and affects both men and women equally.
PPMS tends to be diagnosed in people in their 40s and 50s. Those with PPMS tend to have more problems with walking, along with other symptoms that become more severe.
MULTIPLE SCLERORIS AFFECTS MORE WOMEN THAN MEN
Dr Quek said that in Singapore, multiple sclerosis affects more women: ”Four in five MS patients are women.”
It’s not fully understood why more women than men develop MS, she said. Researchers have proposed explanations that involve an “interaction between genes, hormones and differences in the immune system” but more research is needed.
According to this Johns Hopkins report, a woman’s nervous and immune system is different to that of a man’s, and coupled with hormonal fluctuations, may be why MS is more common in women.
A University of Pennsylvania study stated that women suffering from MS find their mobility impacted, and their MS symptoms can flare up during their menstrual cycle and at menopause.
The Multiple Sclerosis Society in the United Kingdom also said that some contraceptives may increase the risk for blood clots due to mobility issues from nerve damage, leading medical experts to say there is a risk of clotting using certain birth control.
MULTIPLE SCLEROSIS IN PREGNANCY AND MENOPAUSE
There is a common misconception that MS affects fertility in women and the hormonal changes during pregnancy can worsen the disease, said Dr Quek.
However, she said that while MS often affects women who are diagnosed in their child-bearing years, patients with multiple sclerosis are just as likely to become pregnant and have a healthy pregnancy and baby as their peers without MS.
“Studies have even shown a decrease in the frequency of MS relapses during pregnancy,” she said.
Women with MS who are pregnant may have to consider alternative forms of managing their symptoms, she added. Some treatments may harm a developing pregnancy and even after the baby is born.
Neurologists may prescribe different medications to avoid those which can affect a baby’s development whilst the mother is breastfeeding.
According to the University of Pennsylvania report, the earlier a diagnosis is made, and the sooner a woman receives treatment for her MS, the lower the likelihood of a relapse during and after pregnancy.
When it comes to MS and how a woman manages menopause, doctors similarly say more research is needed. With this study, the advice remains: Early treatment and constant medical monitoring can help an MS patient better manage menopause.
Dr Quek added: “No matter the life stage – welcoming a new baby or entering menopause, many women with MS have found it beneficial to establish a support network, consisting of family and friends, who can provide physical and emotional assistance during their life transitions.”
Bailey agreed: “I'm lucky that I have an amazing support system with close friends and family.”
MANAGING MULTIPLE SCLEROSIS
There is no cure for MS, and as it is an unpredictable disease, managing it is an ongoing process.
Steroids and immunomodulatory agents (also called disease-modifying treatments or DMTs) are used to reduce the duration and severity of MS relapses.
Some DMTs also reduce the number and size of damage to the nerve fibres, thus reducing symptoms. These can be administered by infusions via IV drips or injectables and oral medication, or a combination.
In Bailey’s case, treatment takes the form of a DMT called Ocrevus, administered as a six-hour infusion every six months.
According to SingHealth, there is no “best drug” for MS. The optimum combination of medication takes into account the MS type, severity of symptoms, the treatment to be administered, vaccination status, cost and in some cases, patient’s age and child-bearing preferences.
Patients with multiple sclerosis are encouraged to eat a well-balanced diet and stay active with walking, swimming, dancing, yoga, resistance (strength) training and even aerobic exercise.
Said Bailey: “My prognosis is good with my current medication regimen. We will be getting an annual MRI to monitor the lesions on my spine and brain to ensure there aren’t any changes.
“My doctor says it’s important to stay active and have a healthy diet. Also, keep a positive attitude. I have an eight-year-old daughter and a four-year-old son, so my goal is to 100 per cent keep my muscles and heart strong.”
In addition, Dr Quek said some patients may require therapy to help with incontinence and depression.
And because fatigue is one of the key symptoms of MS, doctors also advise patients to do physical therapy or rehabilitation with a physiotherapist to help with strength, mobility and coordination. This also helps to reduce pain, and prevents muscle contraction and atrophy (or loss of muscle).
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