Last reply 2 months ago

Ok so I’m new here and I guess we should just start with a little about me right?
In November 2019 I was a perfectly normal, very fit and healthy 25 year old man. I worked as a teaching assistant in a primary school and spent most of my other time social dancing. Dancing is and will always be my life. I moved to London, giving up the life I had before, just to be in a place where I could work on my dancing.
I had my first symptoms in the last weeks of November and it very quickly deteriorated into what I now know is an incredibly active form of relapsing remitting MS. I know it’s not a competition but if you went through all the possible symptoms you can get, I could probably tick off 85% of the list. I spent two months in hospital, starting in Bristol and moving back to London and I have just come to the end of a month at home. My condition has continued to improve but never simply and with continuous set backs that my MS Doctor at Queen Square (UCL national hospital) has diagnosed as relapses. It’s hard to tell but looking back on it I suspect I reacted well to steroids but relapsed twice in a fairly obvious way before today just within the last three months.
Yesterday was my first ever infusion of Ocrovus (Ocroloizimab) and it went very well. The doctors put me on emergency priority to get my treatment ASAP but also had a discussion with me about the risk of coronavirus that lead to an incredibly stressful weekend and only 3 hours sleep before my actual infusion.
Today is the first day I’ve been able to walk properly around my house without a crutch or holding the walls and I am hopeful for the future, despite having many symptoms that still plague me. This is because of my last dose of steroids bring effective and I’m hopeful that the ocroloizimab will give my body a chance to heal as much as it’s going to.
My friends, family, and ESPECIALLY my girlfriend have been amazing and I couldn’t have kept up my positive attitude without them. My girlfriend in particular is an angel put on this world by God himself and you know I’m serious when I say that because I’m an athiest. She has been my primary carer, my support worker, my wheelchair pusher, my meal maker, my hospital visitor…the list goes on. All of this while she tries to compete her PhD in Neuroscience, ironic.
Part of the support my friends have me was allowing me to constantly supply then with updates of my condition through Facebook, something I’ve become obsessed with since being stuck in just one room for the past 3 months.
Sounds silly but I’m actually planning on writing a book: an autobiography of my experiences. It sounds self-indulgent and I guess it basically is, but it’ll give me a way to process while telling funny stories about the time my Conveen broke or I accidentally shit myself in Nandos…and if it also informs people of what it’s like to be a 26yo going through a medical condition then all the better.
I don’t know if I’ll use this service much but it’s good to know there are people out there, probably many, who have been through what I have and I’d also like to help those who are unsure of the future if I can.
Anyway, that’s me in brief… it’s nice to meet you and I hope your journey is going well and I wish you all the best fit your condition and recovery, whatever it may be.


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2 months ago

Wow @will_middlemoore, that’s quite some ntroduction to this condition! What a nightmare in such a short space of time. Great to be proactive, and Ocrevus is the best of the newer DMDs. You are bkessed by having a supportive partner, tough for her too. Really focus now on continuing to recover and yes, writing is therapeutic at the least. Wishing you an ongoing recovery…. 😊

2 months ago

@will_middlemoore you are clearly an extraordinarily kind, thoughtful and optimistic person. I would definitely buy your book. I hope Ocrevus gives you what it has given me – time-off from thinking about MS, stability and hope. Take care and welcome to Shift-MS. I think the community is very lucky to have you here.

2 months ago

Hi Will and welcome! I’m new to this like you and it sounds like we shared a very similar (and scary) start to our MS journey, although my first relapses were in March and May last year. Like you I had very severe episodes and every symptom in the book, plus many symptoms that even my neuro couldn’t explain! So know that you’re in good company here if you do decide to continue sharing through this site.

You sound like you’re coping very well anyway and I’m so pleased that you are doing better now with treatment. We are at the same hospital too and similar ages, funny that! If you do decide to write a book I would love to read it. Don’t stop sharing your Facebook updates with your friends because heaven knows we need more awareness of our sometimes invisible illness! Best wishes, Robyn.

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