A Bit Of A Blow

In September 2010, days after I received my MS diagnosis, I sat in my living room clutching a letter that had just been sent by my Neurologist.

“Unfortunately this diagnosis of Multiple Sclerosis was confirmed by the brain and spinal cord imaging in Emily which we looked at together today with her mother. This demonstrates several little spots of inflammation throughout different parts of the brain and the spinal cord which would of course account for all her symptoms.”

I remember reading that paragraph over and over again. The reality of the diagnosis still hadn’t sunk in and I was in shock all over again as I looked at the words on the paper, tangible evidence of the nightmare that I’d hoped wasn’t real. It’s a long letter. Perhaps the longest I have ever received from anyone in my medical team.

It goes on to say that if matters worsen over the coming weeks “I would strongly advise that we start her on monthly Tysabri infusions which can significantly reduce the size and the number of areas of inflammation and slow the progress of the disease.” Disease. I didn’t like that word. It made it all feel too real.

I remember crying as I read that letter. I was alone in the house, dressed in my work uniform (a depressing grey blouse that never ceased to bring my mood down) and readying myself to leave the house and face the painful walk up the road to the theatre. I had to snap myself out of it and get on with the day, which is precisely what I did.

A little under a year later I was to have a repeat MRI, which showed significant progression with larger lesions visible and new inflammation. These results would propel me into the wonderful but daunting world of Disease Modifying Therapies (DMT). I was to begin monthly infusions of Tysabri, the drug that would give me back my life.

Now let’s skip ahead to the present day. Ten years on from diagnosis and several more MRI scans showing ‘stable demyelination’, I couldn’t help but feel that the wonder drug was working. Sure, I’ve still suffered very limited mobility and all the other day-to-day rubbish that comes from having MS, but imagine if I hadn’t been on Tysabri! Imagine how bad my MS would be now if it wasn’t for the magic in that juice.

You may remember that my Neuro recently expressed his concern that Tysabri wasn’t working any more and so requested a brain and full spine MRI “to exclude any additional lesion contributing to the increased spastic paraparesis”. Well, here I am, 3 weeks on from that dreaded scan, holding another letter that has somehow managed to reduce me to tears.

“The MRI of the spinal cord shows a few new areas of inflammation… this is likely responsible for the progressive weakness… this has occurred despite being on Tysabri…” I am now being referred for a discussion about switching from my beloved Tysabri to an alternative DMT.

Many of you will know the range of emotions that news like this elicits. It’s a bit like being diagnosed all over again. I feel like I’ve been slapped in the face with a wake up call – “Hellooooo – I’m still here! You can’t get rid of me that easily, sucker” – I imagine that is how my MS would speak if it could talk! I feel scared about trying a new drug. What if it doesn’t work? What if my body rejects it? What if I get horrific side effects from it? What if, what if, what if…

I guess I’ve been living in some kind of dreamland where it’s easier to pretend my MS hasn’t worsened, even though it undoubtedly has. I’ve been putting it down to the increased stress and fatigue that comes from being a parent. But to see the words printed on paper, dictated by a proper doctor consultant man, makes it hard to ignore or deny.

To be honest, it’s a bit of a blow, but…

… I’ve had a few days to digest the news and had time to research other treatments and I’m beginning to feel more positive. I have the best care from my Neuro and nurse team and together with their support, like I did a decade ago, I think I can just about manage to soldier on and embrace this new chapter in my life with MS.

7 thoughts on “A Bit Of A Blow

  1. Thankyou for your post. You are not alone, please stay strong xx

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  2. Hey, you are not alone! This is exactly how I felt when I had to change my DMT last year.

    I’m on Ocrevus and it does feel like it has given me my life back compared to Tecfidera, but you are right, it does feel like a blow and takes time to adjust.

    MS sucks and always hits you when you think you have forgotten about it! Fingers crossed I have been doing well, but on Thursday this week, it hit again (I may have been doing too well!) I am hoping it is a blip, but it does completely suck!

    You are doing great and you are not alone. Big hugs x

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    1. Thank you! Always good to know that others ‘get’ it. I’m looking at Ocrevus as a possibility, it sounds like a good one! x

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  3. vivienne Tuckwell November 14, 2020 — 3:40 pm

    Hang in there. There are some very good options available now. I’m equally not too far from having to make exactly the same decision aagh! Xx

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    1. Good luck with your decision making! It’s so daunting isn’t it?! x

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  4. Nasrin Jooshandeh November 16, 2020 — 6:22 pm

    Thank you. MS is so hard and ive been diagnosed 19 years now. Good luck with whatever you decide. I started Ocrevus in the summer. X

    Like

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