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  • AleksaMindOverMyelin

Can I change my RSVP?

I love surprises – the excitement, the shock, the rush of adrenaline after a secret hush and then, Bam! SURPRISE! Except this surprise sucked. It was a surprise party that was sprung upon me as an unwilling attendee. But here I am and since I can’t un-invite myself to this party, might as well get to know what’s happening – oh, and the party food isn’t bad either so let’s dive into MS while I dive into this charcuterie board.

So, what is MS? It’s an autoimmune disease that affects the brain, spinal cord and optic nerves. Right, right, cool….. But like, what does that actually mean? Basically, my body is a little bit confused and attacks itself – umm talk about ultimate betrayal! I’m pretty sure I treated this body like a temple – brisk walks across the street for porch coffees, only drinking on days that end in ‘Y’ and responsibly pairing my winery visits with cheese boards. Rude. Anyways, there’s a fatty covering called myelin, that protects the nerves and is needed to transmit messages. But, if that myelin gets damaged, nerve impulses are disrupted – varying from minor interruptions to total blockage. Think of it like electrical wiring – not that I know anything about being an electrician, but I’ve watched enough HGTV to get the basic idea. If a wire gets cut, that signal can’t get from point A to point B. This damaged (or lack of) communication can affect anything from physical changes (vision problems, numbness, muscle spasms, mobility, vertigo) to emotional and cognitive variations (fatigue, anxiety, depression). Basically, wondering if one of your symptoms is related to MS is like wondering if you’re going to eat enough mini Halloween candies to equal a regular sized chocolate bar – the answer is probably yes! There are SO many symptoms with MS, making this one of the reasons it can take quite a while for a proper diagnosis. MS shares many symptoms with other conditions (Lyme disease, vitamin deficiencies, structural damage of the CNS and tumors, just to name a few) that need to be ruled out before you can be properly diagnosed; Hence all the blood work and MRIs, in my case, to narrow it down.

In October 2019, when it was first discussed that I likely have a demyelinating disease, I did some more research (I mean, I really had very little knowledge on what MS even was) and found out there are 4 types of MS – like, REALLY? This is already complicated enough so let’s just make this even more complicated, right? If you read my previous post, you might remember that my neurologist diagnosed me with RRMS, which is Relapsing-Remitting Multiple Sclerosis (RRMS). With RRMS, my body will have unpredictable relapses causing new symptoms or old symptoms to get worse – kind of like a toddler tantrum, you never know when it’s going to strike next or how bad it will be! Will my type of MS ever transition to a more progressive form? Maybe – but I’m not ready to think about that just yet!

When my neurologist called with my diagnosis, I listened, wrote a bunch of information down and only after hanging up did I let the emotional side kick in – this news sucks! One of my initial thoughts was the ever-so loaded question, “Why?”. Despite the “my body is a temple” sarcasm earlier, I had actually been trying very hard at diverting the course of my diagnosis in another direction – not that I had any chance of that, but I figured diet and lifestyle were the only things I had control over at that time (pre-diagnosis and treatment plan). I remember thinking “what was the point of sticking to this auto-immune diet if I was still diagnosed anyway?” – as if that was the only thing that made a difference in my outcome. Post-sulking, I did some more research into MS and discovered Canada has one of the highest rates of MS in the world. Ok, check! MS is usually diagnosed between 20-49 years old. Check! MS affects women three times more than men and occurs commonly in people of Northern European decent. Check, check! So, while sticking to my diet, increasing my vitamins and reducing stress were all beneficial, it seemed that no amount of leafy greens was going to alter this course for me. It was just my higher odds and luck of the draw that led my body to this diagnosis – nothing I did wrong. I know that sounds silly, but for some time, I thought it was my fault. Research is being done to figure out how to repair the damage MS causes, as well as ways to prevent it from happening in the first place. Researchers are also looking into what possibly triggers MS and how some risk factors (lifestyle, environment, genetics etc.) may increase your odds in getting MS. Again, as silly as it sounds, it was comforting I didn’t fail my own body totally on my own.

So, while I would have rather RSVP’d differently, seems as though I’m the guest of honour at this surprise party. My friends and family are at this party too, but as toast givers, party game players, drink refill-ers and dance party DJs. So, let’s top up our beverages, hit play and dance through this! Cheers!

Thanks to the MS Society of Canada for the wealth of information!

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