In basic terms Multiple Sclerosis (MS) is a neurological condition that affects your nervous system. Your immune system believes that there’s a virus and so it attacks your nerves, causing damage and unusual side effects. There’s no cure or real explanation for why it happens or where it comes from but hopefully one day we can be a step closer to finding out.
I will leave some links at the end of this post for more in depth information on MS but here is my personal account…
Towards the end of May 2019 everything completely changed for me. Life seemed perfectly normal. In fact, things were going great and I was excited to go away to Tenerife in June. I was working and living in London and enjoying the transition from spring to summer!
The world definitely had other plans for me that year.
My week was ordinary like any other. I went to work and came home and spent the evening relaxing. When I woke up on that Saturday morning, I began to feel the strangest feeling in my feet. The only way I can really describe it is the feeling of having pins and needles at the base of your foot. Perhaps I slept in a strange position and trapped a nerve?
So I simply decided to walk it off and go about my day. However as the weekend passed, it only got worse. From what started in my feet gradually moved up to my ankles and then even further still to my knees.
The lower half of my body became overwhelmed with this numb sensation. It was an odd mixture of pins and needles but still feeling slightly numb. Luckily I could still walk and function as usual but that didn’t take away the fear of the unknown that was happening to me.
Throughout the following week I went back and forth between different hospitals and doctors and every single one told me they couldn’t figure out what was wrong. I was told to go home and not think about it! It would pass in a few days and I’d be fine. I was told by someone else that it was stress and anxiety manifesting itself even though I was incredibly calm and happy at that point in my life. Gradually the feeling travelled even higher to my ribs and I couldn’t handle the fear of my circumstance any longer. I called 111 again and, crying to them on the phone, they sent someone to pick me up and take me to UCLH (University College London Hospital).
At A&E in UCLH they were equally as confused by my condition. The basic tests couldn’t determine the issue but as I panicked to the nurse about it rising higher and higher up my body, her levels of concern reached my own. What if I wake up tomorrow and can’t even walk? What if the numbness grows stronger and I completely lose all feeling?
In saying these words she instantly referred me over to the neurology department at the hospital. I didn’t anticipate that I would need to stay overnight. When you live as a perfectly normal and healthy 22 year old, life does not prepare you for these incidents. Other than myself, I only had my phone and my house keys.
The doctors took me over to my own bed and explained the tests that would need to be conducted. After a little wait, I was taken away for MRI and CT scans to check everything that was going on inside my body. I waited a while for someone to come back and give me any sign of an answer and later into the evening, one of the doctors gave me a brief update. He couldn’t say for certain what it was. He had an idea purely from the scans but didn’t want to confirm it with me until I had completed all of the tests. He prepared me for the fact that it could be Multiple Sclerosis but more tests were needed to be certain. They didn’t need to say any more. As my mum had already been diagnosed with MS years and years before, I already had an idea of what it was; but that didn’t make me feel any less anxious about it.
I got myself ready to stay the night. As I lay alone in my dark, empty hospital room, the usual sound of trees rustling outside my window were replaced with the faint beep of the hospital machines. The low lights in the hallway and anxiety of my situation didn’t let me sleep peacefully that night. I’m sat here writing this now but no amount of words can describe how scared I was that day. I was alone in a hospital for the first time in my life, not knowing if my condition would worsen again by the morning. If I stay awake all night then maybe the morning will never come and it won’t have the chance to get worse.
Luckily when morning finally came, things hadn’t progressed further. The nurses at the hospital were amazing and I’m still thankful to one in particular that let me cry to her that morning and let out all my emotions. My parents got the first train down to London that morning and bless my sweet mum for bringing me a change of clothes and all the things I needed like deodorant and a toothbrush! I never felt so gross and smelly in my entire life!!
My second day in hospital was filled with more tests and scans. Terrifyingly big needles were poked and prodded into me but I was so relieved to have the support of my mum right beside me. I’m forever grateful to her for staying with me as I don’t think I could have managed alone. My day of tests were done but they still couldn’t tell me right then what it was. Moving forward, a temporary fix for my numbness was to give me an IV drip of some steroid mixture. Of course I’m no doctor and this was two years ago so what they gave me, I have absolutely no idea. All I remember is that the mysterious clear liquid worked at relieving my symptoms and I had to have three doses over a couple days.
That meant another night in a hospital bed. Fortunately for me I slept better during night two; knowing that I was getting the best care and help that I so desperately needed. Before I knew it, they let me return home on day three and my mum continued to stay by my side throughout it all. Sadly for me, instead of lying on a beach in Tenerife, I had to lie in bed and rest there for another week. So our holiday was cancelled and I became all too familiar with the four blank walls of my room.
Looking back on this time and writing about it after three years, I can still feel that lump in my throat as I did on my first night in the hospital. No matter how much time passes, when I think back to those few days, it never fails to leave my heart racing and my mind wondering why me?
Fast forward to August 2019 and that’s when I was finally given all the answers. Mentally I had already prepared myself for it to be MS and we were all sure on that, so this visit didn’t feel as frightening. The doctors showed me all the scans of my brain and still to this day one of the best compliments I’ve received is ‘you have a very big brain’! They confirmed what we suspected and I had one legion on my spine and then three small ones in my brain. This was where the nerve damage had been caused due to my MS and was the reason for my strange symptoms.
Even though they confirmed what we knew, it was still difficult to hear that I have a condition that I have to live with for the rest of my life. I’m lucky I can still live and function like a normal person now, but it’s still something that hangs over me and affects me from time to time. It’s not something that you ever really get used to.
The doctors immediately talked me through the types of treatment and we agreed on a plan for the future. I suppose everything since then is history but this is why I’m here writing about my experience. Hopefully I can give a different insight and perspective on the condition and help spread awareness, especially within people my age as I was diagnosed so young.
I’ll leave some links below for more in depth information on MS and it would mean a lot to me if you could take a look after reading this.