I am personally walking at MS Walk 2024 to help stop MS.

On 20th September 2023 I was diagnosed with Rapidly evolving severe relapsing and remitting Multiple Sclerosis. This all started in January 2023 when I suddenly experienced a numb tongue, bottom lip and chin. At the time I thought that it was a viral infection as I also had a chest infection at the time. I was prescribed antibiotics and over the course my chest infection went away but my tongue, lip and chin slowly gradually returned to normal a month later. I didn’t think much more of it.

However, in June 2023 I started to experience pins and needles in my right foot, which then started numbness travelling up my right leg up to my right knee. Again, I didn’t think much of this as I had a football injury where I had to have a full reconstruction of my ACL and Meniscus and put it down to I must have done something chasing the kids on the weekend. However, this soon then started on my left foot and leg. I then experienced “Foot Drop” and it wasn’t until then I actually thought, something is not right here.

During this time, it was now August 2023 and I had started to experience more symptoms these were balance issues, when walking I found myself walking/leaning to one side, leg often started to give way, vertigo, double vision and when walking quickly to catch the train, all colour vision went and I could only see in Black and White, completely colour blind almost. By the time I had got off from my train journey it would have slowly started to come back with colour, but would be saturated, almost like somebody had changed the brightness down low, like you do with a mobile phone.

I visited my Company GP Provider who did numerous tests on me and immediately was not happy and told me that I need to go home and visit my hospital and by giving them my referral letter for urgent treatment and investigation as I was suspect to “Cauda Equina”. I had left work and went home immediately, visiting my local Hospital in Kent, I was waiting around 9 hours to be seen for an emergency MRI on my spine and further tests. The MRI results came back ‘fine’ they had said there doesn’t seem to be anything of concern.. I was advised by several health care professionals that this appeared to be linked to sciatica and signed me up for Physio, but I didn’t agree. I eventually went back to my Private Company GP who wasn’t at all happy with the result and their diagnosis and urgently referred me to see Dr Ben Turner, Neurologist at London Bridge Hospital.

Whilst, still experiencing all the symptoms mentioned above, I had an MRI scan with GAD and a Lumbar Puncture, which was extremely painful. Results came back, which I was asked to bring a loved one as the information is a lot to process and will need the upmost support. Immediately, I started thinking the worse, but I had mentally prepared myself for my consultation.

The moment those words were uttered – "You have Rapidly-Evolving Severe MS" 11 months ago – it felt like the ground beneath me crumbled, leaving me suspended in a void of fear, uncertainty, and disbelief.

MS is an unpredictable and incurable condition that affects people's central nervous systems. It can attack suddenly or progress steadily, bringing a range of symptoms which can include sight loss, incontinence, fatigue and mobility problems. No-one with MS can be sure when or how it will affect them next. This essentially means that I may experience relapses (symptoms getting worse) followed by periods of recovery, my disability doesn't get worse between relapses but after each relapse it can end up worse than before.

The results had showed that I had 6 Lesions on my brain, and multiple on my spinal cord. I was told that my brain lesions shown was “new lesions” and looks severely active but the doctors weren’t sure of the cause.

I was then still experiencing all symptoms already mentioned above, I then had further relapses where my bladder control, going to the toilet became difficult, my hands went completely numb and so many more to list.. it really felt like a never ending cycle where I was experiencing new symptoms almost daily, out of nowhere. In December I completed a further scan in December 2023, which results came back to show a further 4 lesions on my brain. Again, all showing as “new lesions” and urgently gave me letters of referrals to take to my NHS Doctor to put me through their internal system for Multiple Sclerosis treatment.

Unfortunately, my company Medicare does not pay for the private treatment as there is no ‘cure’ and I did not have the funds available to pay the circa £11,000 for my first dose of Ocrevus. Requiring a second dose 6 months later, I just couldn’t afford to do this.

So, I had to wait for the NHS waiting list before I had got my call to finally start receiving the very much needed treatment. A tedious 8 months to be exact!

Finally... I got the call!

In late May 2024, I started an immunosuppressive treatment called Ocrevus which is a 6 monthly infusion that aims to target and kill B cells to reduce the number of relapses I might have. BUT, the risk of relapse remains despite me being on medication. I won’t know how effective my treatment is until my next scan in November this year.

I am so fortunate to be able to walk, talk, see, swallow, think and just generally function as ‘normal’ but there are so many others with MS who struggle with symptoms every single day. Despite various medications being available to hopefully slow the progression of the illness/reduce relapses, further research is needed to hopefully one day find a cure. MS treatments are all relatively new and so there is so much more research to be conducted.

I’ve had to adapt my life to accommodate this condition, change some of my views on my future and it’s not easy. With everything that is going on in the world at the moment and a current cost of living crisis I am aware that not everyone can donate but I would really REALLY appreciate it if you could please spread the word/donate anything you can spare to support MS research.

I extend a hand to others who find themselves walking a similar path, reminding them that they are not alone, that their pain is valid, and that together, we can find strength in our shared struggles.

Your donations will go towards life-changing MS research. Thank you!