Gemma's story - "All I remember him saying were the words ‘MS in your brain’ "

Gemma was diagnosed with MS in June 2019, just weeks after her 21st birthday. This is her story.

In June 2019, I turned 21 years old and celebrated with a 15,000 ft skydive and a big night out with all of my best friends. It was the most perfect day ever and probably the best birthday I've ever had. The celebrations didn’t stop there as the day after I flew out to Majorca with my parents and best friend Lucie for a holiday. The whole week while we were there I noticed a weird sensation in my mouth. At first it was a little bit of a tingle but then towards the end of the week my mouth had gone completely numb. It wasn’t bothering me or getting in the way of my holiday, but I was probably going to get it checked out once I was home. 

The last night of the holiday Lucie and I decided to go to the next town for a few drinks and to experience the night life there. We were sitting in a bar having a drink and all of a sudden my eyesight went blurry. After rubbing my eyes and blinking a lot, I realised I was seeing double. This really scared me as I’ve never had vision problems in the past, so we immediately left, got some water and headed back to the hotel. My first thought was that I had heat stroke because we’d spent the whole day at the water park in 35 degree heat. At the water park I’d also banged my head on a metal sign, so I thought I might have concussion. When we got back I went straight to sleep to try and ‘sleep it off’ somehow. The next day there was no improvement, but I noticed if I shut one eye I was able to see one single image again, so that’s what I had to do. We were going home shortly so I could see my GP when we got back. Going through the airport was a bit of a struggle with one eye shut but we managed to get back to England okay and I booked an appointment at the doctors for later that day.

I told the GP about the symptoms I was experiencing, including the part where I banged my head then later had double vision. He sent me straight to A&E to get a scan because he thought my head injury was causing the double vision. It was all making sense now. Surely I just had concussion and I will be fine in a few days? After hours of waiting in A&E, I finally saw a doctor who said that my vision problems were not, in fact, caused by me hitting my head. This is when I got worried because what else could it be? I then had a CT scan on my brain and they told me to come back the next day for more tests. They also gave me an eye patch to wear so I wouldn’t have to walk around with one eye shut.

The next day I went back to the hospital to have more tests. This is when I had a lumbar puncture which was possibly the worst thing I have ever had done and it still makes me feel sick thinking about it! I had so many blood tests taken and then I was told I had to wait for a bed. I was confused as to why I was waiting for a bed, surely there are many sick people that need a hospital bed more than me? I eventually got a bed and got moved to a ward. There I spent four nights having numerous tests each day and an MRI scan on my brain. Each day I was getting more and more worried and upset about what the outcome would be. Luckily I have amazing friends and family who came to visit each day to help me get through it. On my final day in hospital I was told the neurologist needed to speak to me and that my parents were to come in while they spoke to me. I was thinking the worst at this point. The neurologist then came and spoke to my mum and I about what they had found in the MRI scan.

All I remember him saying were the words ‘MS in your brain’ and the good news was that it’s not ‘progressive’. I just burst into tears having no idea what this meant or what ‘progressive’ meant. He explained that I was going to have a course of steroids through a drip for the next three days but could come back to the hospital for this and didn't have to stay in. He told me my eyesight should go back to normal within the next two weeks and that this is just a ‘flare up’. If I keep fit and healthy I may not ever have another ‘flare up’.

All I was thinking at this point was it could be so much worse and I will hopefully be okay in the long run. But on the other hand it was still hard to believe that just two weeks ago I was living my best life jumping out of a plane and partying for my 21st Birthday.

I had the steroids and eventually my eyesight came back after around five weeks. During these five weeks, I was waiting and chasing up appointments that I’d been promised would be urgent. This didn’t help me move forward, as I wasn’t getting the information I was originally promised and needed. However I was excited about going back to work and getting some normality back into my life and I was really hanging on to the fact that the neurologist said I might not have another flare up. But this wasn't the case, as the weekend before I was due back to work, the whole of the right side of my body went numb. I had no access to the MS clinic as all my appointments had been delayed, I had to resort to going back to my GP for help and advice.

It has now been around two months since I was first diagnosed and I am still very much coming to terms with my condition and how to manage and live with it. I have just returned back to work and am trying to get back to my normal self again.