How I fought and recovered from a 'hidden disease' that could make me disabled for life

Aug 3, 2017

I could have made my peace with dying while my mind and body withered away, but to have no relief from the suffering was unbearable to think about.

I graduated from Delhi University in May 2014. I was determined to become a lecturer, and had even applied to a couple of universities across the country. Unfortunately, I didn't apply to enough, and couldn't get through any college, so I had to wait the year out. Advertisement
That was when I was diagnosed with Multiple sclerosis (MS). Kanika Juneja (right) It started towards the end of September. My body had been getting tired faster and I was experiencing spells of dizziness. I'd told my parents, who, in their wisdom, thought it was my diet and advised me to eat better and exercise more. Still, the feeling of dizziness persisted, and I finally visited a doctor, only to be told the same things that my parents suggested, “You'll be fine, just eat better.” A few days later, on October 2, 2014, I was sleeping over at my best friend, Richa's home. We'd been out with friends, and by the time we got to her house, I was feeling extremely nauseous and dizzy. I finally slept, only to realise that upon waking up I kept getting bites on the inside of my cheeks (my teeth were involuntarily biting the inside of my cheeks). The symptoms, even then, were so little, that my parents and I didn't think of them as serious, at all. Three days later, I felt this odd feeling in my leg that wouldn't go away. I couldn't describe it even to doctors and attendants, who we'd visited, after I insisted that I was in discomfort. This time, my doctor, seemed a bit perplexed, and worried, by my symptoms of cheek bites, numbness, and this uncomfortable and odd sensation in my legs. Advertisement
The doctor advised us to visit AIIMS, Delhi, as soon as possible. I was to see a neuro-specialist. The same night, when my mother handed me a glass of warm milk. She warned me how that the glass was hot. I couldn't understand, as the glass I was holding, didn't feel warm, at all. I transferred the glass to my left hand, only to drop it because of how hot it was. By then, I had no clue about what was happening to me, but I was fairly sure it was nothing grave. The next day, when the neurologist was administering a reflex test, during which, I had to touch my finger with his finger, I could do it with my left hand, but no matter how steadily I tried, I couldn't do it with my right. The neurologist suggested my father to get an 'urgent' contrast MRI of my brain. Even on the prescription, he wrote– 'urgent'.

Things were a blur those days, because every test and every referral was 'urgent'.

I, who had never had the opportunity to observe the medical world up close, was very fascinated by all the machines and instruments. Besides, in my mind, I was sure it was nothing major.

Serious illnesses are for other people. That's what everybody thinks.

I remember the doctor's face while he looked at my MRI scans, he looked very grave and immediately asked me to pack some clothes because I had to be admitted. By this time, it was July, 2015. Kanika and her mother The morning after I was admitted to AIIMS, a full panel of doctors came to ascertain my condition. They were worried about what my MRI showed, and wanted to conduct further tests. In the middle of their discussion, I had to go use the toilet, so I excused myself.

The moment I got off the bed, I staggered and fell. I tried standing up, only to fall back down, again. That was the first time, I was scared. A realisation that something was wrong had just hit me.

The doctors chose to start me on a treatment of steroids. My perception of steroids, at the time, had been limited to knowing it was used by bodybuilders and sports people to bulk up. I was even starting to get wary of staying in the hospital bed. The novelty was wearing off. We would ask the doctors what was happening, but they only said they were still diagnosing. I was undergoing blood tests, scans, etc, but I still didn't know what was making me ill. Advertisement
One day, the doctor came and asked me how the 'pins and needles' sensation in my legs was, I finally had the phrase to describe the uncomfortable feeling. You see, I had gradually started feeling it all across my body, and hadn't been able to describe the feeling until he mentioned 'pins and needles'. It was a relief, at least they knew what they were doing. Soon, the steroids took effect, and I could walk again. The doctor's explained I had what was known as a 'clinically isolated syndrome' typically consistent with an attack of Multiple Sclerosis, but they couldn't confirm until another attack hit. Multiple sclerosis is an autoimmune disease for which there is no known cure. It involves the immune system misfiring and attacking the neurons in the brain, which causes the organs not to receive the signals sent by the brain.

It could mean that any organ in my body, at any time, could stop functioning the way it was supposed to.

The doctor further explained that it could happen to anyone, however it was most common in temperate climates, and that women were more likely to get it. They sent me home with a warning to be on the look-out for another attack which could affect any part of my body. I was still optimistic, hoping that it was just the one attack, and that I couldn't possibly have anything more. Unfortunately, the next attack came only a month later, this time, I couldn't move my eye. I could see out of it, but if I tried to blink or close it, it wouldn't respond. The third attack came close behind the second, I couldn't move my right hand. I would suddenly drop anything I was holding, and off to the hospital we went again, for the usual contrast MRI of my brain and spine. This time, when the doctor entered my room, he looked visibly concerned.

“Kanika, I am sorry. Your disease is very aggressive in nature. Normally, people don't get attacks as frequent as you've had. I am afraid this can leave you with any disability very soon and we will have to start you on injections right away.”

I asked him, thoroughly nonplussed, “Will the injections cure me?” “No, they will only postpone the attacks for six months or so, provided you take them every week.” “Then, what's the point of taking the injections?” I asked, even more confused. “The more frequently you get attacks, the faster you become disabled. These injections will defer your disability. Cause it to progress at a slower rate.” Then, I asked him the question we all were wondering after proclamation of such a serious prognosis, “Is the disease terminal?”

“No, you will gradually become disabled, most likely wheelchair-bound or visually impaired, but can still go on living with it until the age of 80,” he opined.

That's when I felt the rug beneath my feet being pulled. I had been struck with a disease that had no known cause, no known cure, and it would make me miserable. I would have to live a long time being disabled. I could have made my peace with dying while my mind and body withered away, but to have no relief from the suffering, was unbearable to think about. All around me, friends were getting jobs, going abroad and a few were even marrying, but I, who was an overachiever all throughout school, who enjoyed theatre and public speaking, was confined to a bed with the destiny of staying there. I started taking the MS injections upon going back home. The injections came with a host of side effects, extreme weakness, rashes over my body, nausea, and dizziness. The doctor advised me to always self-administer (they had a specific placing and schedule) them on Friday, so I had the entire weekend to recover from the injections.

The self-administration was also a harrowing affair because I would accidentally slip, and once even cut a significant nerve.

The overall trauma from the injections alone did nothing for my fear of them. The MS injections weren't cheap, either, as they cost my family Rs 20,000 a month. And although, they never said anything to me, I could see the worrying and discussions about money that were taking place almost daily at home. I started feeling like a burden on my family. I withdrew into a shell, knowing that while I could do nothing for myself and was suffering, I was taking my family along for the miserable ride. I, eventually, found out about the schemes for MS injections where if you needed assistance, the companies would provide one plus one month, two months plus one month, etc offers on the injections where you got one free month of injections after buying the first month or so. I had determined to receive one plus one month, but the surveyors who came to our home declared that I only qualified for the two months plus one one month, under their financial benefits scheme. I couldn't accept that. I went to my doctor and told him that I was going to stop taking the injections. If they made me disabled, so be it, but I did not have the money to pay for them anymore. He tried to persuade me, but I could no longer accept my parents being bled dry for something that was my cross to bear. In October 2016, my luck changed, I found out about Hematopoietic stem cell transplantation (HSCT). It meant removing stem cells from the body, undergoing chemotherapy so that the immune system that had gone haywire would reset, and then reintroducing the stem cells so that the body could heal. It was a very new research based treatment that had given some very positive results in places like Russia, Chicago, Philippines, and Mexico. It was capable of stopping the progression of the disease, so in my case, where there was very little permanent disability, it was virtually a cure. I found out, that doctors didn't prescribe this treatment until the MS patient was at the last tethers of facing extreme disability or death. However, I felt it unfair.

How could they just sit there and wait for me to become disabled, and then administer the drug that could halt my disease as a last resort? I wanted to be healthy, now! That was my right.

I was determined to get the treatment. I had to at least try. Still, it was very expensive, could cost anywhere between Rs 50,00,000 – Rs 10,000,000. I spoke to my parents who said that they would try anything if it had the possibility of making my health better. I applied everywhere and was waiting, when luckily I heard that Fortis in India, had a trial that was starting HSCT for MS. I became the first person in India to undergo the procedure. In December 2016, I had my eggs frozen, as chemotherapy radiation could cause me to go infertile. And then, after going through months of testing, in January 2017, I underwent AHSCT, which is Autologous hematopoietic stem cell transplantation, 'autologous' meaning that I used my own stem cells. I underwent the removal of stem cells, the chemotherapy, then the stem cells were reintroduced (that hurt the most), and I was kept in isolation for the duration because my immune system was practically non-existent. Thankfully, I have, so far, been free from symptoms of MS since my transplant. I have also had no need to take my medicines or injections. Things that I used to take on a daily basis. I am, also, on a mission to spread awareness about how MS is a 'hidden disease' with no physical indicators and therefore largely ignored. It occurs mostly in women, from whom weakness is expected, and therefore undiagnosed. MS is also considered a disease that affects the brain and spine, which is misunderstood as a mental illness. None of these are true, and for those who suffer from it, there is a cure. I run this website to promote awareness about both, the disease and the treatment that arrests the disease. Kanika Juneja (now) I have a set of tests in December 2017, to ascertain the status of my disease. Meanwhile, I wanted to be a lecturer, but I realised I'm better at interacting with adults, so maybe I will become an adult trainer. It all depends on my results, so fingers crossed. As told to Tanvi Jain All images sourced via Kanika Juneja

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Tanvi J