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MS Awareness Week - Matt's story

Matt is 31 and was diagnosed with multiple sclerosis, a chronic immune mediated inflammatory condition, two years ago. Around 100,000 people in the UK are affected by MS and it is the most common cause of serious physical disability in working-age adults worldwide.

Matt’s testimony is based upon research and interviews conducted in 2021 by Mednet Group.

“When I was in my late 20s, I used to play five a side football on a Sunday in a little pub league in the village where I live and I started being like, unreasonably tired after; like my battery was totally drained and I’d be quite off-balance and sometimes speech felt difficult. I ignored it at first, just thought I was approaching 30 and maybe I was out of shape but then I started getting numb all down one leg and it was carrying on all week after a game.

I actually joined a gym because I thought it would help with how tired I was feeling, but I started getting this tingling, burning feeling sometimes and my chest felt really tight. A friend at the gym was worried it was my heart, so I went to the doctor.

My GP asked me about family medical history, and I texted my mum, but she was more worried it was a heart thing and there’s nothing like that in my family. I had a blood test and the GP said everything looked normal, but I mentioned sometimes my vision went weird and he said I should see a neurologist. He booked an MRI which honestly really frightened me, I didn’t think it could be serious until then. I had a panic attack in the waiting room after because I suddenly thought ‘I’m going to die or be seriously ill’.

The months waiting for referral were awful. I hadn’t really considered it was something that couldn’t just be sorted out – I was young! I didn’t really say anything to friends because I didn’t know what to tell them – it’s sensations and tiredness. I stopped going to football and the gym because I was so tired and I spent too much time alone and got quite depressed, in hindsight. I couldn’t tell if the symptoms were worse or if I was thinking about it more and I was anxious all the time about what I would wake up with next.

When I first saw the consultant, he sort of assumed I knew it was MS and what MS was. I literally didn’t know anyone with MS I could think of. He showed me on the MRI where damage was happening and what that meant about the tingling and stuff. I couldn’t really take it in, it felt like a blow. He told me what treatment he thought I should have but I don’t remember much about what he said because I was in shock. He explained that it couldn’t be cured, that it would progress and that I would become disabled. It felt like grief, like somebody died. I felt helpless.

I’d had some steroids at first which did help but once I went to my first appointment with the nurse, I got a sort of full check-up and she made sure I had all my vaccines and sent me for my eyes checking and stuff. The specialist nurse at the clinic is great; she sees me a lot and I let her know how the symptoms are. She can answer all my questions and she is really understanding when I’m anxious or stressed about what might be a new symptom.

At the beginning I was a mess. Stopped seeing my friends, stopped going out. My nurse really helped me out, got me to see a counsellor and to tell a couple of close mates what was happening. I felt like I wasn’t in control of my emotions; I kept crying all the time when I wasn’t really a guy who did that before. I’ve was a bit apprehensive about going to any MS groups because I thought I would be the youngest or everyone would think there was nothing wrong with me, but I joined some online communities and that’s a good outlet where I’m not as worried about people ‘getting it’. The fatigue is really hard – you just feel useless and heavy. It really affects your self-esteem, your self-worth.

I have what’s called relapsing-remitting MS so, some of the time I can almost forget about it, my symptoms are under control unless I get really over stressed or tired or if I get an infection – that can kick off a relapse and I will need steroids and other things for a while. I use the MS Society and MS Trust websites a lot for information and advice – online resources have been really helpful during the pandemic.

I still give myself a bit of a hard time about not being able to play sports and stuff because I don’t really ‘look’ disabled – I don’t need a stick or anything yet, but I know it could progress in the future, like I might need mobility aids or one of the electric scooters so I can still do things, and I just have to learn to accept my new limits. Friends have been great – I still don’t play football but I do go down and join them for the warmup and the cheering. I recently started seeing a physio to figure out what exercise works for me so I can do my best to stay active. I met another guy through friends who comes to the football with us now and also got diagnoses with MS recently, he’s the same age as me and we are looking to start a small group locally to help others and to support each other.”

Through our Network, Mednet Group work with patients like  Matt, to help drive the strategic direction of our programmes.

28th April 2022

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