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MS update [blog]

Written by Remy Sharp / Original link on Apr. 26, 2022

What seems like only a few months ago, I wrote about being diagnosed with MS, and yet that was over 2 years ago (and the diagnosis was actually December 2019).

As it's MS Awareness Week 2022 and MS was on my mind (literally and figuratively!) I thought an update blog post would seem fit.

My post in 2020 started stating this, which, as it turns out, wasn't right at all:

I was diagnosed with "very mild benign relapsing-remitting multiple sclerosis".

Corrections on diagnosis

After being diagnosed back in 2019, one positive aspect I had to take away from the appointment was that apparently I had no lesions neither on my spine nor brain. During the assessment I undertook an MRI which I would then have again every couple of years (which I think is great treatment but probably a benefit of living in Brighton rather than being special - ie. location privilege, more specifically "postcode lottery").

When I had my second MRI now in November 2021 it turned out that what the neurology consultant had originally dismissed as "probably nothing" turned out to be two lesions on my spine. I remember the consultant telling me the radiologist saying they could see a lesion, but the consultant disagreed. The second scan showed clearly that he was wrong. It also showed a second lesion on the spine that the neurologist was sure was present in 2019.

This was a bit of a repeat of 2019 - one moment I didn't have MS, then I did. One moment I had no lesions, then I had two, in two years - though the upshot was that the spine lesions weren't new.

Bonus though: I had developed two new lesions on my brain.

So that's 4 lesions in the space of a single 10 minute phone call from the neurologist.

My basic way of understand lesions is that they mess with the neurological pathway and the information sent along the nervous system to the brain. They're also permanent damage, and really, no one wants permanent damage on their brain… or anywhere really.

Although no one has explicitly told me, I know now that my MS is classified as active relapsing remitting MS (RRMS). I'm not super sure what that means, and if I'm honest, I'm not sure I'm ready to find out.

Doing drugs

The neurologist that I had was going on to retire at the end of 2021 and they had all their cases reviewed during their exit process. Thusly I got a phone call from them in early 2022 explaining that when my case was presented to the board of (I guess, MS slash Doctor types…) people it was decided that I do indeed need to get onto drugs.

From what I understand, there's a lot of drugs and treatment available for MS, but they focus around slowing the progression and reducing the "relapse" part of RRMS.

Apparently my particular case gave me ALL the options, so we started at the strongest. There was three options that I needed to consider, one that has a high risk of brain infection if you're positive for the John Cunningham virus (JVC) - which I'd never heard of (the virus) and is, from what I understood, benign. Turns out that I was positive and by the sounds of things the brain infection thing was a pretty serious end-game move by Mother Nature so the last two options are injection based and reduce my B cells (which apparently attack the nervous system).

What this means, is that I needed to select a drug, that would intentionally reduce my immune system, and take that drug for as long as I was alive - also known as: FOREVER (unless I guess they solve MS, which I'm afraid I'm not going to bet on).

So I'm starting Kesimpta in the following month. An injectable delivered to my body every single month, forevermore.

How MS affects my daily life

This is a really tricky thing to work out. I think MS' biggest impact is on my mental well being and trying to actually comprehend that I've got a "proper" disease. I keep telling myself that the reality is that nothing has changed, my quality of life is the same and my life expectancy hasn't changed.

Though in reality, no one (Doctors, consultants, what-have-you) has actually said that, but I don't feel like anything has changed.

Part of the problem is that I've feel fatigued for so long in my life I don't really know any difference. My feet feel… weird all the time, feeling totally messed up in my feet is what I consider normal. It's odd to me that when I'm walking along with my partner, they don't feel like they're walking over stones all the time.

I did have an episode during early 2020 (which I think now might have been the brain lesions at work) which I kept mixing up letters. Instead of saying "tupperwear cups" I would say "cupper wear tubs", or when referring to the film "Hobs and Shaw" it was coming out "Shobs and Hors". It seemed kind funny… in a "isn't it funny how my brain is re-wiring what I want to say so it's coming out as nonsense… oh, this could be bad" kind of way. I would pick up that I'd said it wrong, and concentrate to push the right words out. So it didn't really flag up as anything serious (it still doesn't).

I also wonder if my increased tinnitus is a side effect. That's hard to say, as I can't remember it being as bad as it has been for the last year, but then I also tend to adjust my "normal" gauge to how I feel right now.

Then there's a question that every MS specialist would ask me about (apparently because of the lesions on the spine): do I have bladder problems. Except what I'd hear is "do you wet yourself". Turns out it's not quite the same. And it turns out yes, I do have "bladder problems" - my stupid body doesn't know when my bladder is empty. The stupid thing. I just took this as getting older. It's a bit embarrassing to write about it, but it's not like it's something I actually have control of - and it's not like I'll be using this to my advantage in the MS Water Sports activities (:ppffff: Remy made a funny…).

The one thing I've been trying to tell myself is to actually rest up when I'm feeling really fatigued. That's tricky because I feel shattered all the time, and I can't reasonably lay around in bed all day. In fact, right now, this moment as I write, I feel like I'm pushing my brain through sludge just to get to the end.

That's my update. I still feel like an imposter at the MS party, but at least now I can bring drugs to hang out with the cool kids.

Originally published on Remy Sharp's b:log


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