Last reply 1 year ago
Me and my new world!

Hello to everybody out there. My name is Brendan. I’m newly diagnosed. I’m 54 years old, 55 on Monday! Diagnosed last November, but turns out I’ve had it for 27 years, yes 27! My first episode was in 1990. I have secondary progressive ms and a head full of questions. I’m very slowly learning about the new world that I now inhabit. I say new world because my diagnosis came out of the blue. I spent most of last year seeing my GP, various physios, spinal unit etc, trying to find out more about the “trapped nerve” that I had self diagnosed because of this new “part time” limp in my left leg. One thing led to another and after an MRI scan I was told that I had Multiple Sclerosis.
Well, when my neurologist told me, the immediate impact was almost as if I’d been told I had cancer, well, it was to me. When I was a kid, the only ms posters you saw were images of people who looked like Stephen Hawking, so you can imagine what my immediate thoughts were.
I then waited for a month to see the ms nurse. In my first few nights sleep I went to some very dark places. 2016 wasn’t a great year, we had to get my dad into a home with dementia, my mum died on Valentines day, two very good friends of ours for many years died within weeks and in November I was told I had ms, I know that’s just the way it goes, but, you know!
So here I am, grateful to be above ground and vertical. I think a large part of my mindset at this time, is confusion. Simple as that. I’m guessing it’s the case because I’m new to it all, it’s strange to think that I’ve had it for so long, but only just found out that I’ve got it. It may take a while, I’m sure it will.
Has anybody read any articles about the psychological impact of sudden diagnosis, I think that’s why I might be struggling to ingest it all. Although I have accepted it, I’m finding it difficult to believe it. Anyway, mustn’t waffle on, cheers all, Brendan.

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stumbler
1 year ago

Hi @brendan and welcome.

A diagnosis of MS at any time can be a massive shock. As you say, MS has been a taboo subject for too long.

Anyway, the psychological impact is similar to a bereavement. The emotional journey is similar, as you come to grips with the diagnosis.

There’s a booklet all about Secondary Progressive MS (SPMS) from the MS Trust, which may help you :-

https://support.mstrust.org.uk/file/secondary-progressive-ms.pdf

You can order a hard copy from the MS Trust, https://support.mstrust.org.uk/shop .

You might also want to pop in to the South West MS Centre, http://www.southwestmscentre.co.uk/, which is in your neighbourhood.

Just keep talking about it. 😉


vixen
1 year ago

Hi Brendan, sorry to read you story. I was recently diagnosed with RRMS and so echo your sentiments as I am also in your age range. I recognise some of the dark places you went to and I can assure you that your visits will become less and less frequent. This website is almost therapeutic as it’s great to be able to type out a question as and when you need to. The MS community is vast and so there will always be someone with who you can trade experiences. I too remember how MS looked when I was a kid; the world is truly a better place now (well, at least as far as MS goes!). All the best, stay strong!


potter
1 year ago

Brendan welcome to the group I was diagnosed at 55, my neuro thought I had it for many years also. I was diagnosed RRMS and started on Rebif immediately and now I am on Tecfidera. This is a good place to get information and help. If you need to rant and rave we will join you. Potter


merfield
1 year ago

Another late starter, the oldest probably: 76 when diagnosed. Whatever your age – it’s still something to come to terms with. I had my suspicions, a friend with PPMS said it seemed likely to her, so luckily I wasn’t surprised. Here, on this site is the support, a place to rant, have a laugh, and get helpful constructive advice – all fellow passengers….
You’ve come to the right place! Good luck!


brendan
1 year ago

Thank you to all of you for your very kind words. It’s just taking me a while to come to terms with what is, for me anyway, the psychological and emotional enormity of it all. Don’t worry I’m not trying to “big up” my own ms, I know there are always others who will be much much worse than I. However, I speak only for myself when I say about the shock of my own diagnosis to me. I do think this website seems to be a beacon of hope, the immediate realisation that there are many of us out there, and thanks to the internet, we can all share our news, it’s quite a comfort, it takes a bit of the sting out of it for me.
Stumbler, I have popped into the Exeter ms soc, lovely people, but thankfully I don’t think I need them yet, nice to know they’re there though! Thanks to all, Brendan.

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