Multiple Sclerosis is an auto-immune disorder. Do we even know about it? Affects mostly girls and women. Pretty common these days and we don’t even know about it.
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Three years ago Kanika Juneja was diagnosed with multiple sclerosis (MS) that attacks the nervous system, affecting the brain and the spinal chord.
A 24-year-old girl’s spirited fight and awareness against multiple sclerosis has led her on the path of recovery from the disease that most often leads to paralysis or disability. Three years ago Kanika Juneja was diagnosed with multiple sclerosis (MS) that attacks the nervous system, affecting the brain and the spinal cord.
Costly injections were administered on her but without a success, even as doctors found the cause of MS “enigmatic” and its treatment an attempt of hope, she recalls. Kanika is the sister of Anmol Juneja, the face of organ donation in India. Anmol, 21, had made headlines with the first organ donation in India in 2012 when his family decided to go for voluntary organ donation to save multiple lives, after he was declared brain dead.
The Junejas had just about made peace with the irreparable loss and decided to move on with their life when grief struck the household yet again, with Kanika being diagnosed with MS. The symptoms showed up in 2014 as Kanika would feel dizzy and numb with loss of sensation in her right arm. Her condition gradually worsened over the next few weeks and she was admitted to AIIMS on October 8 that year, where she was diagnosed with MS.
“MS is an autoimmune disorder where the body’s immune system starts attacking the protective sheet covering the nerve cells in the brain and the spinal cord.
After that she suffered several attacks which left behind a tell-tale sign of disability in me. “To control this condition, I was being administered expensive steroid injections which, doctors said, would only lessen the inflammation but not cure me.
“I was such a confident woman but the disease gradually started overpowering me,” Kanika says. After undergoing several rounds of costly treatments, her family approached the Fortis Memorial Research Institute having heard of the innovative methods of treatment in this field. Doctors at Fortis suggested her to opt for a BMT surgery.
She was admitted to hospital on January 6, where the doctors harvested the healthy stem cells from her body and they were stored at minus 180 degrees. After that she was put on chemotherapy for seven days during which the bad cells in her body which were causing autoimmunity were destroyed and the stored cells were infused to reset the body’s immunity, said Dr Rahul Bhargava, Director of Clinical Hematology and Bone Marrow Transplant at FMRI.
“The reason for multiple sclerosis remains an enigma. The clinical processes only help slow the progression of the disease and do not offer a sure shot cure,” Dr Bhargava says.
Kanika was discharged on January 26 and kept under isolation for a few months to ensure she do not contract any infection. “Kanika is now on the road to recovery and will be a sterling example for numerous MS patients,” Dr Bhargava says.
Kanika, who is now actively involved in raising awareness about MS amongst the community through social media, claims that the doctors at AIIMS did not inform her about this alternate treatment. “I had just completed my college education when I was diagnosed with MS. I was lucky because I got diagnosed within a week of my symptoms so I was able to avail treatment options faster.
“I started the multiple sclerosis Facebook community with the aim of raising awareness about the disease and exploring different treatment options. The conventional steroid injections and immune therapy are extremely expensive and don’t promise a cure. Therefore I decided to undergo a BMT,” she said.
Currently there are 2.3 million people living with MS worldwide. It is an autoimmune disease which has no known cause or cure. Occurring between the ages of 20 to 50, this is a condition wherein the auto immune system of the body begins to attack the nerves of the brain and spinal cord, damaging the tissue layer around the nerves.
This results in the slowing down of the brains functions and over the time patients and can cause a range of debilities, from vision loss to slurring of speech and walking difficulty. According to doctors, 60 per cent of the people who undergo BMT may not get attacks long term and 30 per cent will get benefited if they have some disability.
There are four types of MS cases. The most common one is the Relapse-Remitting MS where there are relapses and flare-ups. The Primary Progressive MS is a condition which affects only 10 percent of the population and Progressive Relapsing MS is when the disease has progressed and worsened to an extent where there is no hope. The Secondary Progressive MS is where the symptoms worsen considerably over a period of time.
Solving the Mystery of MS: With new advances, researchers and doctors are on the brink of beating this disabling disease.
You’re young, healthy, with endless possibilities ahead-love, career, family. And then…something odd happens. Your body refuses to do what it’s always done. Maybe your left leg gives way suddenly. Or your right arm tingles and becomes weak. Or you can’t see out of one eye. What could be wrong?
Your doctor orders an MRI image of your brain and spinal cord, finds telltale scars known as lesions-damage to your central nervous system-and delivers the diagnosis. You have multiple sclerosis (MS), a disease that might one day disable you.
What happens to all your plans for the future now?
WHEN your immune system is doing its job properly, it defends you against viruses, bacteria, and other microscopic invaders. But if you have MS, some of the immune system’s warrior cells get confused, and decide that your neurons (brain and spinal cord cells) are enemy invaders.
They throw everything they have at the “enemy.” They demyelinate-strip the protective myelin coating-from axons, the neurons’ information conductors. That interrupts the cells’ ability to send signals to the rest of your body. Muscles, joints and eyes, our thought processes-all require clear signals in order to function well.
With no definite epidemiological studies, one informed estimate puts the number of new MS cases diagnosed annually in India at about 8000-much lower than in most western countries-but there must also be innumerable undiagnosed cases, especially among the poor. Even if the incidence is relatively low here, for every sufferer and his or her family, MS poses real problems.
“Indians should be made aware of MS and show empathy towards sufferers,” says SheelaChitnis, national vice-president of the Multiple Sclerosis Society of India (MSSI) and one of the Society’s founders. MS affects about twice as many women as men, and typically strikes in the late 20s or early 30s. You’re more at risk if a parent or sibling is afflicted. “Though we do not know what causes MS, there could be various factors-genetic, environmental-that trigger it,” says Dr Satish V. Khadilkar, consultant neurologist at Bombay Hospital and Research Centre, Mumbai. Many different genes play roles in the condition.
Diagnosis used to be tricky. MS can affect any part of the central nervous system, and so the symptoms at onset can be very different in differentpatients. With MRI scans the condition can now be established with confidence and differentiated from other demyelinating diseases.
Depending upon the area of the nervous system affected, initial symptoms could include sudden blindness in one eye; weakness or tingling in a limb; loss of bladder control; balance problems; or difficulty with reasoning. “Multiple Sclerosis usually affects the optic nerve, brain-stem and spinal cord,” explains Dr Khadilkar.
Adds MSSI’sChitnis: “In the initial stages, it is difficult to identify MS patients. They are often misjudged to be lazy, since they suffer from fatigue, and even mistaken for drunkards due to their unsteady gait. So sufferers should be given disability certificates that may help them in getting jobs, or transfers nearer to locations with better treatment facilities.”
Unlike Alzheimer’s, MS rarely affects memory, general intelligence, or reading comprehension.
The form most often taken at the onset is known as Relapsing Remitting MS (RRMS). Symptoms usually appear without warning, then either completely or almost completely disappear on their own-even if not treated-in days or weeks. But they leave behind damage.
Most people with RRMS (about 80 percent) will eventually advance to SPMS, although that may take 25 or more years: no more relapses, just a slow, steady decline that could eventually be completely disabling.
Another type, Primary Progressive MS (PPMS) affects about ten percent of sufferers and usually strikes after age 40. Instead of relapses and remissions, the symptoms slowly worsen.
Once the massive inflammation of a relapse has been extinguished with corticosteroid drugs, the first-line treatments prescribed to limit further relapses are inteferon drugs or glatiramer acetate.
But these drugs put the brakes on the immune system as a whole. And a well-functioning immune system is essential to health. So, the goal of the newer lab-produced monoclonal antibody drugs, much like the goal of our own natural antibodies, is to target more precisely cells that cause disease. Dr Tim Coetzee of the US National Multiple Sclerosis Society dubs monoclonal antibodies “smart bombs,” thanks to their ability to “wipe out the immune cells that are bad, but leave the rest.”
The most recently approved monoclonal antibody for MS, alemtuzumab, is actually a repurposed drug, developed in the 1980s to treat a type of leukemia. Clinical trials showed that alemtuzumab reduced both the number of relapses and the extent of brain lesions in early RRMS.
Three new oral drugs-fingolimod, teriflunomide, and dimethylfumarate-are now available. Before their approval, all MS medications had to be injected.
Some sufferers may have to wait for the latest treatments, however. “Availability of medications is very variable worldwide,” says Professor Alan Thompson of the MS International Federation. There are no drugs approved specifically for Secondary and Primary Progressive MS, and those used for RRMS don’t work against the progressive form, although anecdotal evidence suggests that their use during the RRMS phase may delay or prevent later progression.
“Physiotherapy is effective in managing MS-related problems like poor balance, decreased functional capacity or increased levels of fatigue,” says senior neuro-physiotherapist Pooja Bajaj of AktivOrtho, New Delhi. “Physiotherapy improves muscle strength and mobility-related issues in people with significant disability. Exercise also improves mood and general well-being.”
Working the body, in other words, might coax the brain into self-repair.
Soon doctors may have yet another “smart bomb” in their arsenal, but with an important difference. The new monoclonal antibody, known only as rHIgM22, is the first that appears capable of rebuilding the neurons’ protective myelin coating. That means it might be able to halt or even reverse damage in the progressive phase.
In one 2014 study in the UK medical journal The Lancet, statins, originally developed to lower cholesterol, dialled back both nervous system damage and disability in SPMS. Another 2014 study, reported in the journal Neurology, suggests that cannabinoids-compounds found in the marijuana plant-can help rebuild the protective myelin coating on a neuron’s axons, potentially offering a new treatment for both SPMS and PPMS.
Women have long reported suffering fewer relapses during pregnancy, prompting University of California at Los Angeles (UCLA) researchers to administer estriol, a hormone that’s abundant during pregnancy, together with glatiramer acetate to non-pregnant women with RRMS. In this study, also reported in 2014, the women taking oral estriol had 47 percent fewer relapses than those who got glatiramer acetate injections and a placebo, and also scored higher on cognitive tests. Estriol is prescribed widely for menopausal symptoms.
And researchers like Dr Emmanuelle Waubant, professor of neurology and pediatrics at the University of California at San Francisco MS Center, are puzzling out why some get MS while others escape it. Dr Waubant found that though exposure to some common viruses appears to increase the risk, exposure to others might actually lower it. But that doesn’t tell the full story.
“There are probably interactions between the genes one has, the type of viruses one acquires, and what time you acquire those infections,” says Dr Waubant. Understanding these complex interactions may help researchers develop strategies for treatment and prevention.
Those afflicted can also help manage MS themselves. It tends to be more prevalent in countries where people get less sun exposure, and being deficient in vitamin D (produced in the body in response to sunshine) increases the risk.
“Vitamin D is now known to improve our immunity,” says Dr S.M. Katrak, emeritus professor at Mumbai’s Grant Medical College and the Sir JJ Group of Hospitals. “I always recommend improving vitamin D levels in patients with many immunologically mediated neurological problems of which MS is one. You can get more vitamin D from early-morning exposure to sunlight. If that is not possible, take vitamin D supplements after talking to your doctor about dosage.”
“Though considered an incurable disease, there are disease-modifying therapies that reduce the inflammation and progress of the disease,” adds Dr Khadilkar.
Simple measures could be the most important. Although MS’s course is unpredictable, experts say you’re likely to increase your odds for better outcomes by adopting a healthier lifestyle. If you smoke, stop! Smoking both increases the risk of getting MS and speeds its progression. Eat healthfully, reduce stress and be active.
Recently there’s a concerted focus among neuroscientists around the globe towards finding treatments, especially for progressive MS. So, in a span of almost 20 years, we’ve seen this disease go from having no treatment options available to having nearly a dozen treatments for relapsing remitting MS, which is a remarkable turn of events. Indeed, many of the experts interviewed for this article believe we’re on the brink of new therapies to limit progression and potentially reverse MS.
With the drugs recently approved, and others coming through the pipeline, there are good options for managing it today-and real hope for beating it tomorrow.
In 2005, SohiniBanerjee, then 29, had just moved to Bangalore from Mumbai and into her dream job as a sales trainer in a multinational company. While looking forward to a successful career, she’d also hoped to set up a new home and get her parents to stay with her.
Then, one morning while jogging, Sohini suddenly tripped over and fell and found it hard to get back on her feet. Eventually, she managed to get up and even went to work that day. There was a nagging pain in the knees, and the lower part of her legs felt numb. An X-ray showed everything to be normal.
Yet, a week later, the pain and numbness lingered and she found it difficult to walk. An MRI provided the grim diagnosis: Progressive Multiple Sclerosis. Sohini’s dreams were shattered when the doctor explained matters to her.
With her doctor’s guidance and treatment, she continued with her job, although it involved much travel. She also got in touch with MSSI’sSheelaChitnis, who has since been guiding her on managing the disease and making her life as normal as possible.
In 2008, during a sales-training session, Sohini suddenly had a strong relapse. Soon she had to give up her job. The next year Sohini married her friend Prashant. In 2010, she set up Positive Healing Club, an online group, with a vision to spread positive thoughts and motivate people everywhere. The group now has well over 6000 members of whom only 16 are MS sufferers.
“Sending positive messages and information, including presentations, to club members through e-mail and social media, keeps me motivated and helps me see the bright side of life,” avers Sohini, who has moved back with her parents and Prashant to Mumbai.
A decade since she was detected with MS, Sohini is positive that she will not let the disease debilitate her. She regularly does the exercises suggested by her physiotherapist, eats right, and remains stress-free.
Her advice to MS sufferers: “Please unclog your brain, remove the ‘patient’ tag from your mind. You will then find life much easier to manage.”#KhabarLive
