My name is Victoria and I was diagnosed with RRMS in May 2024.
In July 2022 I noticed a change in vision in my right eye and a few days after visiting my GP, I was referred to an ophthalmologist. At the appointment concerns were raised about the poor vision in my eye so they went to get a consultant. When she came into the room I was told “you’re just one of those people that need to try harder”.
So, being discharged at that point in 2022, I went away and ‘tried harder’ but six months later I was still struggling. I was concerned by this initial advice but trusted her as she is a medical professional, even though she hadn’t told me how to ‘try harder’. I’m still not sure what she meant exactly. I had never had any issues with my vision before and I was upset and scared by the sudden changes. It made me feel like I was being dramatic and just needed to get on with it.
In that time I also had pins and needles in my hands that lasted a few weeks. I went to the GP and a blood test showed I had a folate deficiency. When I finally went to the optician a few months later they referred me back to hospital and I opted to go to a different hospital. This was now September 2023 and unfortunately due to the length of time I had to wait for my first MRI referral, which I had in January 2024, my right optic nerve has atrophied so I have been left with permanent damage to my vision.
From there I was referred to a neurologist and told he was 99.9% sure it was MS. In March a second MRI with contrast confirmed this and showed that between January and March I had developed a new lesion, which was active. My diagnosis was confirmed in May 2024 and I started on Kesimpta in July. Despite the initial difficulties I had, I am really grateful for the NHS and the care I have received since.
Whilst all this was happening, I was in the midst of planning my wedding to my wife. Two days after we were married, I was contacted by my Kesimpta nurse, arranged through the NHS as part of the treatment, who asked me whether there was any possibility I may be pregnant, and if I was using any contraception, because you can't take Kesimpta whilst pregnant. I explained that there was no chance that I could be pregnant as I was in a same-sex relationship.
I then received a call and was told that despite this and having never been with someone of the opposite sex, the pregnancy test was compulsory. The nurse also said it was the third time that week he had had the same conversation. So, I bought the cheapest pregnancy tests I could find for 89p, and confirmed I was not pregnant before starting my treatment. The nurse that came to my house also made sure this was done despite me again explaining the situation. I was also told that if I am not on contraception, I need to take a pregnancy test before my treatment each month.
I do think this is frustrating for those of us that are in same-sex relationships, especially having never been in a sexual relationship with a man in my life. They just didn't seem to take this into consideration and were very strict about having to do it.
Since my diagnosis I have developed some anxiety related to living with MS, which I am having therapy for. My main worry was that I would lose vision in my "good eye" and the impact this would have on my life. I got into a bad habit of checking the vision in my good eye repeatedly and if I felt any physical symptoms anywhere in my body it would really affect me. I would struggle to sleep and cause my MS symptoms to flare up, which would then trigger my health anxiety. I just got into a vicious cycle that I couldn't get out of. I did have to take some time off work for this but have been doing much better since starting with talking therapies. I am also really fortunate to have an amazing support system with my wife and family who have been there every step of the way.
Aside from this my life has remained pretty much the same, although my outlook on things has changed. I still go running and do everything I did before, I am just mindful that I need to listen to my body and practice more self-care.
I’ve also found the MS Trust useful. While going through my diagnosis I visited the website and read through a lot of the articles around symptoms, what might cause a flare up and how to manage relapses. I also had a look through the different treatment options and after reading through the options, I felt Kesimpta was the best fit for me so was happy when it was recommended. I've found all the information reassuring and have also signposted my family and friends to the website for more information.
If you feel that there is something wrong or something has changed [in your body or symptoms], then voice your concerns. Don’t just go away and “try harder”. It might be frightening at first but there is plenty of support available.
