Eleanor was recently diagnosed with MS and, after conducting personal research and consulting with her health professionals, opted for Lemtrada as her first treatment. She explains how she came to her decision
After I was diagnosed I read everything I could, on everything from DMDs to diet to ingesting worms, before settling on the sites I found the most informative and reliable. I looked at the MS Trust, MS-UK, MS Society and built on this. I read NHS England policies, NICE and ABN guidelines and found these to be useful. Information from the MS Trust helped me make sense of areas I struggled to understand. Bart’s Blog has remained a good source of information on all things MS and there are also a number of social media groups where MSers share treatment experiences.
On the Bart’s MS Blog they have the mantra “time is brain” – that is, that early treatment can improve your long-term outlook. This has stuck with me, and the more I read, the more my resolve strengthened to hit this disease hard and early. I’m aware it remains questionable if any of the current DMDs delay transition to secondary progressive MS, but given most relapses leave some damage and it only takes one to devastate, it made sense to me to reduce these as much as possible.
Coming to terms with MS
The research blogs were quite hard to understand initially, and also somewhat daunting as they evidence the hard facts and dark side of MS perhaps more than other sources. I needed to hear it though. I didn’t want sugarcoated advice or snippets of information, I needed information which was direct, full and evidence based to be able to make informed decisions. I still can’t say I fully understand all the terminology all the time but I do have a much better grasp through my research, and because of this feel more confident in managing my MS. Becoming more informed has definitely helped me navigate my way through the system and also in coming to terms with the disease.
My window of opportunity
I’d read relapses are only the tip of the iceberg and, although my health had been stable, I wanted to know if anything was going on I didn’t know about. The “time is brain” theory was always at the back of my mind and I wanted to be as proactive as possible in preserving it. Lemtrada had been approved at this point and was already on my radar. I asked for another MRI and after some discussion this was agreed. The scan show new inflammation and so I actively pushed for Lemtrada. My rationale being: this was my window of opportunity, I’d had breakthrough disease while on interferon and it was only a matter of time before another relapse came my way. The first relapse was severe and it floored me. Lemtrada has risks but I believe these are manageable. MS on the other hand is a very real and significant threat to everything I value. Doing nothing carries the biggest risk in my view.
When I was diagnosed I had a frank conversation with my consultant and while he said Lemtrada wouldn’t be his first choice for me (he suggested orals), I was eligible and he would support and respect my views. I had prepared for the appointment and my decision was an educated one. I am extremely thankful that I have a proactive neurologist who hears me out. While we might not always agree, there is mutual respect and understanding. For the first time I felt hope for the future.
I’ve now had my first treatment, and at the moment I have no symptoms or disability. With many working years ahead of me I hope this continues for a long time to come. It’s been a long road but right now I feel I have everything to live for. Lemtrada may not be a cure, but for now at least I can take comfort knowing I’ve done what I can with the tools available to me. The rest as they say is up to fate.