Before we begin it is important to point out that Multiple Sclerosis is a disease that impacts every patient differently – this is my personal experience with it so far, and it is what I needed to read myself when it first came into my life in October 2021; there will be someone out there like this who this may help one day.
When I was going through the initial shock of knowing I almost certainly had Multiple Sclerosis in October 2021 (nine months before official diagnosis), it was a very dark time. I was filled with anxiety, and quickly sank into depression, even having suicidal thoughts; this lasted for about 4-6 weeks on reflection, but all the way through I found different anchors to cling onto that helped me lift myself up and get me to where I am today in February 2023: happy, living a fulfilling life, at ease with the fact I am an MS patient - here are those anchors
John King -
My first anchor is a rather unlikely one but it was finding out that CNN political analyst John King has MS, and by chance he actually revealed he had MS just a few days before my initial discovery. I’ve long admired King, and the way he presents his analysis of elections, using the “Magic Wall”, where he will zoom in on the most obscure American town and explain why it is significant they have voted a certain way, and it was a ray of hope to learn of his diagnosis and see him talk about it. It was a feeling of, well I am not alone as a famous person I know and respect has this, but also he’s 58 years old and he looks very well, and is one the best political analysts in the business. Of course MS differs from one person to the next, but at my time of discovery it was really important for me to see this, and hear his road to diagnosis – he mentioned he mostly had sensory issues for the last twenty years, something I could relate to, and so it was hope as my case to date seemed not too dissimilar to his – I’ve read since that he has bad days, but the bad days he mentioned didn’t seem that bad to me at that moment as before this I believed I was months away from accruing more disability.
This emphasises the point that representation matters, and sharing a diagnosis matters – King may never know just how much he lifted me in a very dark moment. John King if you ever read this, thank you. Of course, this makes me seem a hypocrite as I write anonymously but one day I will be ready to come out more publicly.
Data & Dr. Aaron Boster -
John King was my first anchor in the very early days of this anxiety / depression filled period, the next rum on the ladder out was a video I saw by Dr. Aaron Boster on the Multiple Sclerosis Severity Scale (below). Boster’s videos are an absolute godsend for anyone who has MS, or knows someone who has MS, he deserves some sort of humanitarian prize for his YouTube channel alone, let alone his work at his clinic. In this video Boster explains the MSSS, and shows how it is a rough indicator of a patient’s MS course; severity of MS and future severity of It is measured by counting the number of years since first symptoms and putting that together with a patients current EDSS score. This provided me hope as I was able to recollect that my first symptom was in March 2014, which meant I was nearly eight years in, and my EDSS was 0 as I had only sensory symptoms, which indicated I had a higher chance of having a lighter course. This was hope for me, and once again something I could cling on to – I was now thinking that by following the MSSS it is likely my disability will accumulate in my 60s/70’s, which again isn’t great but is much better than my initial thoughts of in the next few months, or later on my 30’s or 40’s. Other research I did on the MSSS, and other indicators of a less severe course gave me further confidence that things weren’t as bad as I initially thought.
I was a runner before MS came into my life, however during this initial dark phase I didn’t run – I attempted it but I mentally just wasn’t there. However, after slowly but surely building myself back up after eight weeks or so I was ready to start running again and sure enough I did. I started running in December, 5k three times a week at first, before ramping things up to 25k a week. Many neurologists describe exercise just as important as a DMT, and it is this that motivates me to keep going with my running. Once, my running was back it really helped me get out of that dark place I was in – I was taking back control, and running to mental recovery, all the while aiding my neurological disease.
Dietary changes -
Taking control was a huge leap towards regaining my mental health after the initial shock of MS, and besides running another area I found in which I could take ownership was my diet. Quickly, I started taking vitamin D and Omega 3 daily. I also started to drink more water, circa 6-7 glasses per day, I reduced my milk intake by only having black coffee, I ensured I ate fish three times a week, I even practiced intermittent fasting for six months; eating only between 12-8pm for five days a week. There are various studies that suggest the things I have listed help, though we cannot be fully certain, however they wont do you any harm, and in my case they’ve only done me good. Vitamin D I swear has made me a faster runner (placebo?), intermittent fasting helped with energy management, and not drinking coffee with milk has also proved good for my energy levels. I stopped intermittent fasting in October 2022 as the cold makes me crave breakfast, but I will kick it off again in April I think and do it during the summer months.
Doctor change -
Another step on my road out of the darkness was changing doctors. My first neurologist wasn’t for me; I had to debate with him, and he favoured a wait and see approach, so I was fortunate to be in a position to get a second opinion from my now neurologist, and she is much better, mainly because she listens. My current neurologist diagnosed me in July 2022, some eight months after my initial discovery and although I was gutted (disappointed for the international readers), I was in a position to mentally deal with it due to the previous anchors picking me up, and it also made me feel vindicated for the previous steps I had taken.
Starting DMT -
The final anchor and the one that cemented my journey out of the darkness to a place where I am at ease with MS was starting Kesimpta. I had anxiety beforehand “what will the side effects be? Will this make me tired all the time? What are the long-term risks?”, and despite having side effects after the first jab, it has been pretty much a non-event since. It is a very comfortable pain-free pen injection, and to date it has given me no side effects – for example after my third induction dose back in October I travelled across the country by train a few hours after and then ran 7.5k! Of course there are risks of catching infections but I guess I’ll just have to mask up and be cautious of where I go, but it’s a small sacrifice to live with, given the work the Kesimpta is doing in the fight against MS. My hope/theory is that the long term risk will evaporate as newer, more refined drugs come on the market – 5 years from now we could have something with stronger efficacy that doesn’t suppress the immune system as much!
Thanks for reading.