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Living life with MS

Meet the members

We know how important it is to hear other people's stories and experiences and so we want to give you the chance to share yours! Whether you want to talk about your diagnosis story, your treatment, your tips and tricks, your career... or even something completely unrelated to MS - we want to hear from you. You can see some previous stories below.

 
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Natalie

35, diagnosed with RRMS in 2016

"It was soon clear from MRI scans and Lumbar punctures that my type of MS was very active and didn’t look like it would be slowing down anytime soon.
My amazing Neurologist suggested, 2 highly effective DMTs, Lemtrada or Tysabri. Hating the idea of monthly infusions, I chose Lemtrada which meant I had to sacrifice breastfeeding my newborn, which was awful, but my son, knew the assignment lol and managed bottle feeding very quickly.

Three years into my diagnosis presented 2 failed DMTs, multiple relapses and long hospital stays. The relapses that I like to call “Soul destroying” mainly attacked the right side on my body. From Optic Neuritis, the painful numb arm, leg spasms and of course the neuropathic, sharp shooting pains that would shoot occasionally through my right arm, whenever I was active with my arm during the day. At this point I had enough and just tried the to hide my head in the ground and hoped the world wouldn’t notice.

In August 2020, just days before my 34th birthday. I noticed that a lot of people in the black community, especially mine, were not conformable talking about illnesses. The words “just pray over it” “God will heal you” “ You will be fine” “this is nothing” “keep it private and don’t tell anyone”, this made me so upset! So now, I decided to change the narrative by being open about my life with MS. That is how the birth of “The Nerve of my MS” started.

I decided I would hold nothing back, If I was in pain, I would say and post it, if I had a fall I would post it, if I did something I wasn’t able to do I would post the wins. The good, the bad, and the ugly, something that is not popular on Social media. I was tired of feeling ashamed of something that was not my fault, that I couldn’t control.

However, like most bold moves, you loose loved ones along the way. My main family were and have been supportive but extended family and family friends have distance themselves from me till this day. It’s fine though, it’s great to be around the people who love you no matter what. Through being open about my struggles with MS via social media, I have managed to connect with so many lovely, encouraging, supportive warriors and it really has changed my life. At the moment, I am in St George's NHS hospital in South London currently undergoing Stem cell transplant (HSCT) and I am so happy to join this amazing group.”