Living with multiple sclerosis

Multiple sclerosis receives plenty of media coverage and awareness in the developed world. Sadly, there is a lack of awareness about the disease in India, where its effects are just as devastating

Multiple sclerosis [MS] is an autoimmune disease in which the body’s immune system attacks the central nervous system. While there is no known medical cure for MS, there are several treatments that can relieve symptoms and slow down the progression of this disease.

Causes and prevalence

Since the discovery of MS in the 19th century, medical science has come a long way in terms of understanding why the disease occurs, its diagnosis and most importantly, its treatment.

The nerve cells in our brain send messages to the rest of our body. Each of these nerve cells has a protective cover called the myelin sheath. In MS, the body’s immune system attacks this protective covering. This disrupts the communication between the brain and the rest of the body resulting in a wide range of physical, mental, and even psychiatric symptoms.

Until a few decades ago, Indians were thought to be protected from this disorder as compared to their western counterparts. However, as the number and reach of neurologists have increased and with the aid of widespread MRI availability, more and more people with this disorder are now being diagnosed. This has raised the prevalence, especially in the cities, to around 3 – 5 cases per/lakh population. Surprisingly, this is still lower than the prevalence in some areas of northern Europe where almost 100/lakh suffer from this disease.

What is the reason for this selective affliction? This has been a topic of much scientific debate and the focus of several studies. It is now known that the disease is more common in countries farther from the equator. Certain other genetic factors that are beyond the realm of routine clinical testing may also be contributory. Also, MS is known to be more common in women, perhaps because they are more susceptible to autoimmune conditions in general.

Symptoms and diagnosis

The onset of this disease is usually gradual, cryptic and can mimic a host of other ailments, sometimes delaying the diagnosis for years together. Nonspecific symptoms like tiredness, tingling numbness, blurring of vision, giddiness can be challenging to interpret, but more specific symptoms such as the sudden inability to see with one eye, sudden imbalance to one side, paralysis of one side of body, sudden weakness in both legs or urinary bladder symptoms, especially in the age group between 15 – 25 years alerts the neurologist to suspect multiple sclerosis.

Just as with other neurological problems, there is no single ‘test’ to confirm multiple sclerosis; however, with the help of a combination of patient history, clinical exam, MRI imaging and spinal fluid testing, a diagnosis of MS can be reasonably made. Of these tests, MRI is especially important and indispensable to diagnose and quantify MS. Sometimes other eye tests like a VEP [visual evoked potential] study are also required.

After the diagnosis

A diagnosis of MS can be a bolt from the blue for the patient as usually the individual is in the prime of his life and the disease can have immense social, psychological and financial implications. MS doesn’t just affect the individual; it also affects their entire family. A patient usually goes through various stages of denial, anger, depression; but with family support, counselling by the doctor and self resolve, acceptance is possible.

Treatment options and costs

The basic treatment of MS is to prevent relapses or attacks, which if not prevented, can lead to permanent disability over a period of 15 to 20 years and can make the individual wheelchair bound with the need for assistance for day-to-day activities.

The treatment for MS is three pronged: disease modifying treatment, acute attack treatment and supportive treatment. Among these, the most important are medicines known as disease modifying therapies, which are small insulin-like injections taken on a weekly or daily basis for at least a year or two. These injections are patented medicines and the average cost per month is  INR 30,000 – 40,000. The neurologist helps the patient to decide which medicine to choose depending on the side effects, which are usually manageable with simple oral medicines.

In the last decade or so, stronger and apparently more effective disease modifying therapies have been invented, which are reserved for second-line treatment as they are more expensive [approximately INR 80,000 per month] and have potentially more side effects.

Smoking, lack of exercise, vitamin D deficiency and exposure to hot environments is known to increase the risk of a relapse. As the disease affects all the spheres of one’s life—profession, family, even sexual health—depression is common. It is for these unrecognised outcomes of the disease that doctors usually enlist the help of family, friends and self-help groups in maintaining a positive outlook towards the disease.

With the help of the right treatment, regular aerobic exercises, a positive outlook and supportive treatment, the battle against MS can be won and a person with the ailment can lead as normal a life as anybody.

This was first published in the February 2015 issue of Complete Wellbeing.

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