Living with MS: My Personal Journey

I was diagnosed with relapsing-remitting MS in December 2020. I had been suffering from numbness in my chest and fingers, which I thought was due to my blood sugar levels.

Two months later, those symptoms didn’t disappear, so I called the doctor. They got me in the next morning for a face-to-face appointment, and I was referred to a Neurologist. After multiple MRIs (Magnetic resonance imaging),a lumbar puncture and VEP (visual evoked potential) tests, I eventually received my diagnosed.

At my appointment with my Neurologist, I was offered DMDs and given a list of approximately four different treatments. The DMDs were categorized by effectiveness, but there were some I wasn't eligible for because my MS is not as active as others. Initially, I agreed to start Aubagio, but I was also told about the other medications.

After six months, I decided to go on what I now call, A Big Walk. I hadn't gotten very far when I started dragging my feet and suffering from spasticity in my legs. This had never happened to me before.

What happened after was a landslide of symptoms. I had them all: pins and needles in my hands and feet, extreme fatigue, an inability to walk properly and spasms in my legs all, my Neurologist advised me to undergo a new MRI who showed new lessons on the MRI.

I looked online at the MS Trust and MS Society websites, various NHS resources, forums, pharmaceutical websites and journals for anything I could find. I thought about what would work for me. Would I actually remember to take tablets twice a day? What were the potential side effects? What would the effect of the medications mean for my life going forward?

Not taking a DMD was never really an option for me. My relapse had been so debilitating and terrifying that it had turned my life upside down. I didn't want to go through that again, and if I was offered the chance to prevent that from happening, I was going to take it. After having a discussion with my Neurologist, I decided to change my MDM to Ocrevus.

Ocrevus would be given every 6 months by intravenous infusion. The first two times, I received a half dose to adapt and to prevent side effects. One year later, it is common to receive the first full dose of the Ocrevus infusion. I was worried, but without hesitation, I accepted the dose. The day after, I had side effects and worried about my life. My symptoms were shortness of breath, trouble breathing, and skin problems including rash and itchiness.

In the end, I chose Kesimpta because it was potentially more effective at preventing a relapse, had fewer side effects, and I was happy to self-administer the medication. I preferred the idea of taking the medication at home rather than at the hospital and I liked the idea of taking control of my treatment myself. I didn't really think about how new Kesimpta was. I had read articles about the trials and subsequent approval, but I had complete faith in my neurologist and the MS team. I had a new appointment when I decided to opt for Kesimpta, and the schedule of treatment was clear and concise. I had to have a flu jab, a blood test and cervical screening before I started.

After the first injection, I had no side effects, with any of my subsequent injections. I didn't have any pain at the injection site. So far, so good! I had a follow-up appointment a few months in to check how I was getting on and to make arrangements for my next set of blood tests. I have to have those every six months while on Kesimpta.

I still struggle a bit with walking, making it difficult to have a good sleep. Plus, when I get tired, I do notice the impact on my concentration and memory, but my MS symptoms seem to have improved since starting Kesimpta. It was made clear to me that this medication is preventative. It's not meant to help with symptoms, but I am starting to feel like myself again.

My advice to anyone trying to decide on which DMD to take (if any) is to think of their lifestyle and what would work best for them. MS can take a lot from us, and medication should not be another thing to worry about. Kesimpta works for me; I like having the control of doing the injections myself; it is quick and easy, and I am well-supported by both my Neurologist and MS team.