We could be the change for a brighter future
There’s been times since my MS diagnosis that I’ve almost stopped believing in myself. My confidence gets knocked. I can feel different to other people, and that I won’t have the picture I painted growing up.
I need those people around me who won’t let me stop dreaming.
Strange sensations led to my diagnosis
I was diagnosed 8 years ago, aged 32. It started with all kinds of weird sensations. I had numbness in my legs, and then a feeling like hundreds of rubber bands were wrapped around my knee. I just wanted to rip them off! It affected my mobility for months.
If I looked down, I’d feel a shock down my neck to my back - now I know that’s called Lhermitte’s sign.
And for weeks I had a burning sensation around my waistline and it hurt to have clothes touch it.
My diagnosis took a while. The doctor put my symptoms down to things like a trapped nerve and shingles. Once she asked me how things were at home. It was my chiropractor who wrote to my doctor and suggested I get an MRI scan. Within 24 hours of the scan I got a phone call saying they suspected MS.
I count myself lucky to be on my treatment
My MS team have been amazing. They got me on treatment as soon as possible. My MS was quite active and they suggested Tysabri (natalizumab). For 18 months this worked well for me. But I had to come off it as I’d tested positive for the JC virus and my risk of developing the PML infection was increasing. Then, after a break, I went onto Lemtrada (alemtuzumab). My journey with Lemtrada was tough at first as it’s affected my thyroid. I was very poorly until I got medication for it.
Once I felt better I was able to take a step back and count myself lucky I was on this treatment. And that I had options when my first treatment had to stop. I’m so grateful for that.
Getting involved in research to make a difference
I’m only on Lemtrada because of people with MS who got involved in research. The people who took part in the clinical trials, through the many years it took to test it until it was ready to go.
I’m lucky I keep well with my MS and I want to stay like this forever. But if in a few years things don’t go the way I want them to, I’d like to think my doctor will say: ‘we’ve got this you can take’.
I joined the UK MS Register because I wanted to get involved in any way I could to help make a difference. As a family we believe in God. My dad always said to me ‘there’s always a reason you get sent to the battlefield’. I have to work my way through it to find the positives. That’s what got me involved in the MS Society and the UK MS Register.
Data, ethnicity and MS: so many questions
By collecting data from people living with MS, we can make better decisions for support and care for everyone up and down the country. I think it’s a massive deal. I want to be able to help everyone in the future and make sure there’s the interventions people need.
I’d also love to know how many British Asian people are living with MS in the UK. When I was diagnosed, I couldn’t find anyone out there who looked like me, and who had a similar lifestyle.
Now I’m the group coordinator for Asian MS and have connected with lots of people at different stages in their MS journey.
It’s important we learn more about how ethnicity affects our chances of getting MS, and how we should best manage it. How does it interact with something like vitamin D? With more data from people from diverse backgrounds, we could find out. I’ve signed up to the Adams Study. It’s researching which genes in people from different ancestral backgrounds might be linked to MS.
MS has made me the person I am today
It’s bittersweet. I’m paying more attention to my health and fitness than I ever have. I’ll meet friends and they’ll say, ‘you look better than you ever have in your life!’ And it’s because while I’m well I’ve got a massive reason why, every day. I’m fighting this condition. I’ve had this realisation that life is pretty short and you have to make the most of it every day.
It would be massive to stop MS in its tracks. So no one has to be uncertain about how MS might be with them.
Everyone should be looked after and taken into consideration, there should be treatments for everyone that help, no matter what stage they are in their life.
Getting involved in research is all about giving hope and giving someone a brighter future. And making a difference to how they live with MS and the quality of their life. There can’t be any better feeling than that.
In helping others you’re helping yourself as well. You feel good - we could be part of a cure one day.
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