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Living with multiple sclerosis
Multiple sclerosis is difficult to diagnose and equally difficult to live with. But there is greater awareness about how the disease can be managed.
For three years, doctors kept telling Niharika Sawhney that her symptoms - sleeplessness and fatigue - indicated anxiety. Sawhney lived with her problems till three weeks ago when a doctor at the Capital's Ganga Ram Hospital managed to diagnose her.
The 24-year-old has been suffering from multiple sclerosis (MS) all these years. It is a chronic auto-immune disease which affects the central nervous system and leads to symptoms like fatigue, tiredness, numbness, tingling, difficulty in walking, bladder problems and blurred vision. In the long run - 20-25 years - it can lead to some degree of disability.
Incorrect diagnosis is one of the biggest challenges of dealing with MS because it mimics the symptoms of a host of other ailments. There haven't been any epidemiological studies on MS in India but doctors estimate that it is prevalent in about 5-10 people per 100, 000. The incidence is much higher amongst Caucasians - 100 per 100, 000.
An MRI scan or a spinal tap and the history of symptoms can help reach a conclusive diagnosis. An MRI catches plaque deposition in the brain and/or spinal cord, which is marker for this disease. These deposits form when the fatty insulation around nerve cells, called myelin, becomes hard and damaged. This leads to a communication breakdown between the brain and the central nervous system, hence resulting in symptoms like reduced motor skills, blurred vision, numbness and urinary problems.
MS is also characterised by recurring episodes or 'attacks' when symptoms flare up. "Over a period of 15 to 20 years the disease can lead to disability. Patients can become wheelchair-bound, " says Dr B S Singhal, neurology head at Bombay Hospital who has been working with MS cases since the 1980s. He adds that people deficient in Vitamin D, present abundantly in sunlight, are prone to more relapses. This could perhaps explain why the disease is more common in countries that are distant from the tropics.
What leads to formation of plaque on nerve cells? There is no clear answer to this question yet. Researchers have hinted at various reasons, like heredity, deficiency of Vitamin D, certain virus and even activity of sex hormones. What is clear, though, is that the disease strikes early, mostly between 20 and 35, and women are twice likely to get afflicted than men. However, it can be managed with medication and lifestyle tweaks.
Findings of a study conducted by AIIMS on MS patients that was released last week confirmed that 70 to 80 per cent of all MS patients in AIIMS were in the age group of 18-35 years. The institute, just a few days ahead of World MS Day on May 29, also revealed its ongoing efforts to educate doctors in Delhi to improve the diagnosis and treatment of the disease.
Dr Singhal, however, believes that detection of the disease has improved both in numbers and accuracy with more neurologists, MRI machines and improved diagnostic criteria. "But awareness of the disease especially in rural areas is still very less and they don't have access to diagnosis and treatment, " adds Singhal.
The disease is managed by taking interferon injections, which reduce the number of attacks. These have to be taken throughout life. "There are various types of interferon injections, for instance, some are given every week and some every second day. Overall, the cost of these injections comes to around Rs 30, 000 to Rs 40, 000 every month. These injections are patented, therefore, the high cost. They are available free under CGHS and ECHS. Studies have shown that patients who comply with this treatment have reduced number of attacks and lesser disability, " says Dr Rajneesh Kumar, consultant neurology, Fortis Memorial Research Institute, Gurgaon.
Interferon injections are disease modifying agents that help in managing MS. But when there's an attack patients are administered steroids intravenously for five days. Right now the cost of MS medicines is steep but Dr Kumar assures that it will come down "once generic drugs enter the market. " In the US, oral medicines for MS are now available but it will be quite a while before they come to India, points out Dr Singhal.
Apart from medication, MS can be managed by introducing small changes in lifestyle. "The most important change is to accept this change in your life and be positive about it, " says Meenakshi Bhujwala, secretary MSSI. Her husband was diagnosed with MS 20 years ago and ever since she has been actively involved in helping other patients and spreading awareness about it. "It strikes you in the prime of your life, affects your profession, your family and even your sexual health. That is why depression is one of the outcomes of the disease. Therefore, maintaining a positive outlook is crucial for managing MS. Support of family and friends is also very important, " says Bhujwala.
MS patients have to avoid heat at all costs as heat flares up symptoms. "So, in summers we are not allowed to step out during afternoons, " says Sawhney. "Women who cook are advised to limit their exposure to gas stove. For instance, chop vegetables outside the kitchen, " says Bhujwala. Avoiding very hot baths in winter and hot drinks is also advised. Fatigue is a constant in MS, so patients are advised not to over exert. Those who exercise are asked to split their workout into three-four sessions. Since depression is observed in 20 to 30 per cent of all MS patients, meditation and yoga are suggested as therapy.
Most MS patients can live a normal to almost normal life. Only a very small percentage actually develops any serious disability
It is incurable like diabetes but can be managed with lifelong medication
It strikes early, between the ages 20 and 45
It is not contagious or inherited
It does not lead to paralysis
There is no known cause for MS
It is difficult to diagnose as in early MS the symptoms come and go and might indicate a number of other disorders
Source: Multiple Sclerosis Society of India
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