The pencil sharpener
So, my first initial thought when I heard the words ‘Diagnosis of Multiple Sclerosis’ was, what even is that? I felt instantly guilty working in healthcare and I didn’t know what is was. If I’m being totally honest I thought it was an older persons illness, maybe linked to genetics and it left people very ill and in usually in a wheelchair. I tried to split it up to make sense of it so first the word Multiple meaning more than one, collective, many (that would explain the scale of the inflammation) then the word Sclerosis……. Nope I had nothing. I needed Google to help me out here.
Now I love Google I have asked it the most ridiculous things in the past and it always has an answer for me, but what I love doing the most is asking Ryan to ask it questions in different accents to see if it understands him, it’s very fun you should definitely try it if you haven’t already. But my fondest memory of Google is the time I found out that raisins are actually dried grapes someone at work told me this one shift, I had no idea and didn’t believe it for a minute until google confirmed it for me so then I accepted it, I still actually can’t believe that I never knew that fact for around 27 years, I still find it amazing!
Right I’ve got the laptop I know what I need to type off I went, but oh wait hang on a minute… erm how do you spell Sclerosis? This was not a good start thank god for phones with predictive writing and spell checker, I’m proud to say now that I can spell it with no assistance possibly because of the thousands of times I’ve googled it, but hey ho whose counting. I copied the word Sclerosis into the laptop and pressed search.
The first result was from the NHS it read, Multiple sclerosis(MS) is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance, all very true they may have been looking at the right scans and diagnosed the right person after all. Next was the ms society their definition being, Multiple sclerosis(MS) is a neurological condition, that means it affects your nerves. Your immune system normally protects you by fighting off infection, but in MS it attacks your nerves by mistake. In MS, the coating that protects your nerves (myelin) is damaged. Oh wonderful so my immune system after 31 years of being a good, trustworthy, honourable source has suddenly decided it doesn’t like Myelin anymore and started a war against it, poor myelin it never stood a chance. The immune system could have at least let me know, because I am in theory the one hosting this battle. Typical I’m always the last to know.
I carried on reading and searching the web I came across words such as, disseminated sclerosis – the spreading of it far and wide, debilitating – to become weak and infirm and pseudoexacerbation!! The worsening of symptoms without actual inflammation or damage. OK I think that was enough for one day. One thing I did read but didn’t want to read anymore of as it spoke for itself and came up many times was that on average people with Multiple Sclerosis live 5-10 years less than the average population, I tried to put it to the back of my mind but it was something that was going to determine a few poor decisions later on for me.
So I’d finally found out what it was and yes it was bad, yes I felt sad but it wasn’t the end of the world, unlike the day I found out Mark from Westlife was gay WORST DAY EVER!!! Now that was truly devastating and something I’ve never got over!! I think the day I found that out I went straight home from school and locked myself in my bedroom for a week! So hearing my diagnosis wasn’t the worst news I’d ever heard and I think if I can live through Westlife’s news I could tackle anything.
Some weeks went by I searched now and again at things but I didn’t want it to take over, I was starting to feel a bit better walking a little better, things were looking good. I’d been told an MS nurse specialist would ring me to discuss medication options and answer any questions I may have. I’ve always disliked taking medication I just don’t like swallowing tablets or knowing that I’m putting drugs into body even though I know there helping me, I wasn’t born with these drugs inside me and what if my body doesn’t like and rejects them? I remember being about 9 and I had a tooth infection my mum had taken me to the GP when I heard him say “a course of amoxicillin tablets for 7 days” I’d looked at my mum and said no please I don’t want tablets! He’d turned to me and said “why don’t you want to take tablets?”, I don’t like swallowing them I’d told him hiding behind my mums back and his reply “Well you will have to get used to it one day” I have to say he was absolutely right, god there good these Dr’s aren’t they? But saying that I suppose once you’ve felt as ill as I did you’d take anything! So throw ’em at me I’ll take them all.
Anyway the day came for the phone call from the MS nurse she said her and the Consultant had discussed the options and they felt there were three treatments they could offer me. Three intravenous treatments at a different hospital to my own (WHAT! Intravenous! I’d not even considered that, I’d been thinking it would be tablets all this time) I hate when that happens when your waiting for something and then when it arrives you realise its a completely different scenario to the one you had thought all along, a bit like when you visit the German Christmas Market and order a Bockwurst roll with onions and mustard, then its handed to you and its a bog standard Frankfurter, slightly disappointing but all is not lost, still had onions and mustard on it I suppose.
My three choices were: Natalizumab (Tysabri), Ocrelizumab (Ocrevus), Dimethyl Fumerate (Tecfidera), I know I thought exactly the same as you when I first heard them. The nurse went through each one, the relapse prevention success rate, the side effects, the duration of treatment things like that.
Once she had finished I was thinking them over and I said to her “I’m actually starting to feel better now, are you sure I don’t need another MRI scan to see if its cleared a little and maybe I won’t need such aggressive treatment”, the next part is how I got to fully understand MS and finally got my head around it, she gave a little chuckle (nicely) and said “That’s not really how MS works, once the myelin has been destroyed by the immune system, it leaves behind scar tissue as it repairs itself, it’s never quite the same again, never as strong, it doesn’t fully repair to what it once was” Oh I didn’t know that, she referred to it a little like a brand new pencil the led fully coated, once its been sharpened its lost its first layer, then its second and so on, still functionable but never quite the same after each sharpening (or relapse in terms of MS).
Right I got it a little better now, I decided to go for the Natalizumab (Tysabri), it had a great success rate over 75% of people go on average 4 years relapse free, it was the only one that would mean I was still allowed some outside contacts while Covid was still around, the others required you to completely shield, the side effects were very similar for all of them. But with the best drug comes the biggest risk with Natalizumab there is a risk of Progressive Multifocal Leukoencephalopathy (PML) is a rare but potentially fatal brain disorder caused by a virus. The risk increases the longer you take immunosuppressants, they assured me they keep a regular close eye on it with frequent blood tests.
So I was all set, I’d received my diagnosis, learnt what it was, treatment chosen, how was the first injection going to go I wonder? How would I feel? What would I be thinking?…?
Any words your not sure of head over to Medical Terms in the main menu.
Thank you for reading
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