Preeti Pandey, 35 (name changed on request), has been fighting multiple sclerosis (MS), a nervous system disease that affects the brain and spinal cord by damaging the sheath that surrounds and protects the nerve and nerve cells, for the past 13 years.
“One day while we were having our dinner, my father asked me to stop winking, which was weird as I wasn’t winking. Soon after, my mother checked me for winking. When my parents told me to stop winking, yet again, the next morning, I knew there was problem that needed medical attention,” she said.
Her doctor referred her to a neurologist and she was diagnosed with multiple sclerosis.
“At that time the medicines available in India were not effective, so I went to the US for treatment where I was put on chemotherapy. After several dozes of over two years, I am now living on maintenance drugs,” said Pandey.
While Pandey got diagnosed in time and also received appropriate treatment, not all patients suffering with multiple sclerosis are as lucky.
The disease usually affects people between the age group of 20 and 40 years. Its symptoms may be single or multiple and may range from mild to severe in intensity and vary in duration.
Visual disturbances, wherein a person may notice a patch of blurred vision, red-to-orange or red-to-gray distortions or loses vision in one eye, are usually the first symptoms of the disease. The symptoms occur due to inflammation of the optic nerve and it also causes pain in the eye.
Weakness in the limbs is another sign, especially if the person is finding difficult to hold even a sheet of paper between fingers. Muscle spasms, fatigue, numbness, and ‘pins and needles’ sensation are some of the other common symptoms.
Some people also experience intermittent loss of sensation, problem in articulating words, tremors, or even dizziness. Nearly 50% of the cases complain of mental changes, including decreased concentration, memory loss, attention deficit, manic depression and paranoia.
The cause of the disease is unknown, but there are several factors that determine whether a person is at a risk of developing the disease or not, including family history and immune system disorders triggered by certain viruses.
In India, cases of multiple sclerosis have been steadily rising since the 1970s, when the frequency of cases was one in 100,000. Today, the frequency is 5-10 per 100,000, a cause for worry among neurologists.
“In India, 5 per 100,000 population is affected with the disease. But since our population is high, numbers are automatically high,” said Dr M V Padma Srivastava, professor of neurology, AIIMS.
To cater to the rising need, Vidyasagar Institute of Mental Health, Neuro and Allied Sciences (VIMHANS) set up a dedicated multiple sclerosis clinic in collaboration with the Multiple Sclerosis Society of India earlier this month.
“Before 1995, there was no disease modifying drugs for multiple sclerosis. USFDA gave their first approval in beta-interferron (the drug) in 1994-95. Following which, there has been a lot of good research in the area and hence the future for MS medication is bright,” said Dr Shamsher Dwivedi, senior consultant, neurology at VIMHANS.
While there is no foolproof cure for the disease, with present medication, one can reduce the risk of relapse by at least 70%. However, the yearly cost of drugs could go up to Rs. 3-6 lakh.
“The heavy medication costs are a definite burden, where the government should step in to offer help,” he said.
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