From GCSE to degree - my multiple sclerosis journey

I was diagnosed with multiple sclerosis at 14. To put a bit of perspective on that, the letter from the hospital stating the fact came through roughly a year prior to me sitting my GCSEs. Now at that time my only real knowledge of MS was that it causes small splodges to appear on MRI scans of your brain and spine that make your head spin and your legs not work, and everything gets magically better after a 3-day course of intravenous steroid (oh how I’m sure we all wish that were true).

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In the beginning

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The first signs actually appeared when I was 13, on a family summer holiday in France. The sun was out, there was not a cloud in the sky, and it was stupidly hot outside. I’d been in this kind of heat before and never really thought anything of it, so happily tagged along on a walk around the town where we were staying. After about half an hour, I noticed that I started to feel a little drowsy, at first I dismissed it and just put it down to being tired after spending most of the day before travelling. The drowsiness persisted however and gradually worsened until eventually it got so unbearable we had to duck into an air-conditioned bar where I could sit and try to wake myself up. 

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At this point no real red flags were showing, for the rest of the holiday I endeavoured to stay hydrated and not spend too much time in direct sunlight and I didn’t have any other problems, so we just put it down to me not remembering to drink enough water.

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As summer ended and my 14^th birthday passed, there was no sign anything was up right until December when one night I woke up with severe vertigo. It only lasted for a spell lasting about 15 minutes or so (long enough for my stomach to decide to reject the previous night’s dinner however) but I just put it down to something I had eaten the night before as I was so focused on the aforementioned effects of the dizziness.

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This same event however repeated twice more, the time on none other than the night before Christmas Eve. At this point my parents and me were concerned about the problem, particularly how it seemed to have no trigger that we could tell. Fortunately, despite the time I was able to get an emergency appointment at our local surgery. We explained the problem to the doctor who then did a couple of tests to see if they could trigger the sick feeling but after not being able to, they gave me a diagnosis of labyrinthitis. We went home from the doctor’s content that they had got to the bottom of the issue and that the medication I had been prescribed would have me back to normal in no time…

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Diagnosis

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Christmas passed, then New Years, and then another few months went by with no symptoms or signs of anything, furthering the idea that all I had at the end of the previous year was labyrinthitis and that there was absolutely nothing else wrong whatsoever. 

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One morning I woke up and struggled to walk in a straight line.

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It was a spring morning like any other, I got up, got dressed and left the house to get the bus to school. On my way from the bus stop to school, I started drifting one side to another as I was walking, as well as tripping over seemingly nothing. I wasn’t really sure what to think, so again, I took it no further than just a bad night’s sleep the night before. This continued for about a week or so, gradually getting worse, but as a teenager who wasn’t really the type for sports who now also had an excuse to get out of any kind of PE or sports at school because of ‘labyrinthitis’ I never really picked up on how serious the problem was getting.

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It wasn’t until I spent a night at my grandparent’s house when my grandma almost immediately picked up on my now catastrophic walking (their house has a lot more open space than my parents’ where I had been bouncing off walls without realising) that another emergency doctor’s appointment was made. This time I saw a different doctor than before who picked up pretty quickly that something was up by my description of the problem now (the fact I walked into the office door frame probably helped his case also). He wrote a letter, handed it to me, and told my grandad to take me straight to hospital.

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This began the fortnight of long waits, scans and needles that I’m sure most people with MS know all too well. On the Saturday after the first week, the hospital rang my Mum and said that after reviewing the bloods and MRI scans I’d had done, that I was to be admitted as an in-patient the following week for a 3-day course of intravenous steroid to try and reduce the inflammation that had been causing the problems I was having.

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At the end of my two-week escapade in hospital, I was more or less back to the normal I was at about a month prior, my balance was normal, the weakness in my legs was gone, and I wasn’t getting any more episodes of vertigo. So that was it right? The doctors had figured out what had gone wrong and had given me some strong medicine to make me better, now I could go back to normal?

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It took about a month, but the results from the lab about the lumbar puncture I’d had done in hospital came in the post, and they said that I have MS.

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School and MS

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Following my hospital stay, the doctors had said to speak to school about staggering my return to schooling, to start off doing 2 classes a day and go from there. My parents and I had a meeting with the head of year at my school and they were more than happy for me to start doing this. As I had been doing normal schooling whilst also suffering from MS fatigue for several months (of course at the time I had just been passing that off as the normal tiredness that you get from being a teenager) this was a godsend as it meant I had more time to rest and could prioritise classes and base my schooling around my fatigue. This carried on for the rest of the school year, and as time went on, I stepped up to doing sometimes 3, and even 4 out of the 5 timetabled classes a day, depending on how severe my fatigue was.

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At the start of the next school year, I continued with the part time schooling that I’d been doing and was able to manage my fatigue as well as I had been doing before. After a couple of months however, I was hit with a relapse. This is when things took a turn for the worst, after being admitted to hospital, I had some physical tests done and got sent home with a prescription for more steroid to ease the inflammation from the relapse. I thought this would be me for maybe another year before having to deal with MS again in any kind of major way, but about 6 weeks later, I notice that my balance is thrown off and my legs are a lot weaker signalling yet another relapse, and this continued to happen…for about 9 months.

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DMTs

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After the second relapse, my consultant thought it best for me to try a DMT. As at this point, I was bouncing back from the relapses so well, she recommended I start on one of the weaker ones. This first one I tried was Avonex which one takes as an EpiPen-type injection in the thigh once a week. I took to doing the injections myself much better than I thought I would, the side effects however less so. I was on this medication for about 7 months and without fail every time, the day after I was full of fever, no matter how much paracetamol I took, and I essentially lost a day from my week. What made it even worse was the relapses continued, maybe less severe, but they happened, nonetheless.

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Not long after my 16^th birthday, I had a relapse which for the first time produced a new symptom, I woke up one morning and couldn’t feel my left hand. The usual rhetoric ensued, ringing the hospital ward informing them of the relapse, I get more steroid, and I go home, only this time, my hand issue lingered. There wasn’t much more really that could be done in terms of medication to take so this would have to be something I let my body deal with on its own, and to be honest its still not 100% to this day.

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The next time I saw my consultant we both unsurprisingly agreed that the Avonex wasn’t working for me, and it was time to try something new. Given the number of relapses I’d had at this point, my consultant saw no reason why I shouldn’t qualify for Tysabri. This is a much stronger DMT, administered via an infusion every 4 weeks. A couple of blood tests and another MRI scan later I started and…it worked. I still now had to go to hospital every month but no more steroid and no more having to deal with legs not working.

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Taking Tysabri doesn’t come without risk however and to be on it permanently you need to be JCV negative and unfortunately for me, I am not. This meant if I continued it for longer than two years, I ran the risk of contracting PML which I most definitely did not want to happen and so, shortly after my 18^th birthday just before I started at university, I had my last dose of Tysabri.

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All was not lost though, in the time I had been on Tysabri, the NHS had approved the use of Ocrevus, another infusion-based medication only instead of monthly, it is administered every six months. This was much more convenient and even better for me it had the same efficacy as Tysabri, so relapses were kept at bay.

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Covid

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I had my first Ocrevus dose in November 2019, making it May 2020 when I’d be due for my next one, which is of course after we all went into lockdown when Covid-19 shook the world. Being in isolation didn’t bother me, I moved in with my grandparents a few days before the national order with my parents and me thinking that best with me now being immunocompromised due to Ocrevus. I was used to not going out much anyway, studying-induced fatigue and the impacts of my streak of relapses meant I never felt up to doing much in the way of socialising, so when we were told it was safer to stay at home, I had no objections to having more time to stay in and play video games.

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With everything going on I didn’t give the idea of downsides to our situation any thought at all, and as it turns out staying in, having limited contact with others, and much less general exercise has an impact on your physical and mental health. Unfortunately, with the distractions of studying, I didn’t realise how bad things were until about two years later. After Covid kicked off, my university course became online-only for the entire second year, and I did a work placement during the third which was office based and involved sitting behind a desk most of the time and so not much of a different routine.

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In the final year of my university course things were almost back to normal, classes and lectures were in-person again and the term social distancing was being heard less and less. It was about then that I realised that I should probably be using a crutch when I was on-campus, and so began my realisation of my physical deterioration over lockdown.

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Life now

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At the time of writing, I am just a few days away from my 23rd birthday, I take two medications every day, one for fatigue and one for keeping my bladder in check. When I’m out I walk with crutches, and if I need to go any kind of distance without a car, I use a wheelchair. 

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About a year ago though, I graduated from university with a degree in Computer Science, and a couple of months later I landed a job working as an analyst for my county fire service. If you’d told me that last part even before I had MS (I’d only just become a teenager at that point mind you) I would have been more than happy with the way my life had turned out, and I’m sure most other people would be too. Now couple that with the fact that I’ve been living with an autoimmune disease that makes me feel tired whenever the sun comes out and anxious that I won’t make it whenever I’m more than 30 feet from a toilet, when the proverbial hits the fan in life, I’ve learnt that at the end of the day, it is still what you make of it. Sure, MS has closed many doors for me over the years, but it made me realise that there are some doors open that I didn’t even know were there, and going through them resulted in things turning out even better than I thought, and maybe even better than they may have otherwise.

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Multiple sclerosis is a truly horrible disease, and life is harder because of it, but if you take the shoves and punches it throws at you, it is still possible to get up, brush yourself off and carry on. Maybe not in the way that you wanted, but it’s in a way that you have decided, and MS can’t stop that.