Last reply 1 year ago
MS & Imagined Effects!

Hi,

Got diagnosed a month ago, almost by accident. I had been living with a few effects I suppose, looking back retrospectively.

Since being diagnosed, I’ve not kept it private, so people at work know, and I’d rather be known as a “positive chap”! However, is it just me, or do other people secretly feel as though every single new pain or ache is the latest harbinger of doom, at least for a few minutes?

It does worry me a bit, from time to time, but I only have to think of someone genuinely worse off, to pull myself together. Then I feel bad for comparing myself to some other unlucky bugger! The ethics of having MS can be quite disturbing 🙂

Just me?

By the way, new poster on here, so hi.

Cheers,
Nev

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merfield
1 year ago

Hi Nev, I was diagnosed with late onset PPMS Sept last year. I stay positive and ‘live in the moment’. I reckon everyone has moments when it gets them down including myself. But life goes on and progress is being made in research and medication so keep your eye and mind open for developments. I’m a new poster too. It’s good to share. Cheers.


stumbler
1 year ago

Hi @neva and welcome.

A diagnosis of MS can make sense of various medical mysteries in our past. To some it is a shock, to others a relief.

It is not wrong to put this all into perspective, which is something that we all need to do. It allows us to reassess our lives so that we can focus on what is really important to us.

Being recently diagnosed, you’re now on a steep learning curve. Let us know if we can help at all in this.


neva
1 year ago

Thanks you two, appreciate the comments.

Off to work soon, so back to putting on a brave face!

Cheers, have a good day all,

Nev


vixen
1 year ago

Hi there. I was recently diagnosed too and feel exactly the same. I was talking at length to my husband about this yesterday, trying to describe that feeling of being all at sea and not understanding what your new idea of’ ‘normal’ is.
I actually laughed when my consultant asked me questions about memory, agility etc. I am 51 and can’t possibly decide to what degree I attribute difficulties to MS or ageing in general, given my age, phase etc. I have found this site invaluable and hope it brings you strength and reassurance!

My wife was diagnosed last November and we can completely relate to what you are saying. Every new thing I would extrapolate out to where it might go in a day, week, year or lifetime. In the end I realized (or more likely she made it known to me) that asking about it every hour isnt really useful. It only reminds her of things when she doesnt need to be reminded. In the end what helped me was realizing that if it was a new relapse coming on, what could we do about it? Its not like the dr is going to do anything until its been at least 24 hours and then only steriods arent likely to effect that outcome that much. So if there isnt much that can be done in the moment, why worry about it every moment. So maybe just take a note of where you are each morning and call it good for the day.

Since there isnt much we can do in the moment, we researched and looked at all our options we could do long term. We started Tecfidera and we have been following OMS (overcomingms.org) very carefully. We are hoping those will improve our long term outcomes. However, in the short term we are trying to live to the fullest of what we can. Counting your blessings is probably always good, even if it is sadly someone else thats worse off then you. Hopefully if we ever become the person we are comparing ourselves to, we will still be thankful.


neva
1 year ago

Hi you two (three?),
Vixen, yes, at 53 I feel your pain too LOL! Separating old age symptoms from MS symptoms is well nigh impossible really, for sure!
CD, yes I’m not sure if my wife started doing what you were doing, I would be all that grateful either!
Becoming more philosophical seems to be a pretty good start to living out the rest of one’s days. One would feel pretty silly living in fear for 20 years, and then look back and realise the 20 good years would’ve been better without the fear!
Still, it’s alright talking the talk, I will have to see whether I can walk the walk, in the future.
It will be easier with support, so thank you all for your kind words!
All the best,
Nev


isaacson72
1 year ago

I’ll second the comment that having somebody ask you constantly how you are is really NOT helpful! My husband finally stopped asking, but only when I promised to tell him if anything new happens. I also, like you, have the harbinger of doom thoughts. I think that’s normal with a chronic issue like MS. I try to ignore it, or at the very least, not voice every single concern!

I actually have found it harder to put on a happy face now, 16 months after I was diagnosed, than it was initially. But I’ve managed to keep the happy facade at work, and mostly keep it up at home too. I really believe the “fake it till you make it” mantra works.

What I’m still learning is how to not overdo it. I always thought I was just out of shape (even when I was in really good shape) when it would take me a long time to recouperate after a hiking trip or even just a really busy, active day. Now I know better & can plan for that kind of thing and moderate what I’m doing… but I often don’t. I overdo it all the time. Usually my body will shut me down if I take it too far, but I don’t get to that point as often anymore.

-Michelle


isaacson72
1 year ago

Oh — and I do the same thing, when I see somebody worse off. I recently did the MS Walk in our area and seeing some of the folks there in wheelchairs or with canes really affected me.

The one good thing that has come out of MS (for me) is more compassion. I am not so quick to judge other people, since MS (and other conditions) often have invisible symptoms. We all know now that while somebody can seem perfectly normal on the outside, you don’t know what’s happening inside. I knew that before my diagnosis, of course. But when it happens to you, you see the world in a totally different light.


doubleo7hud
1 year ago

Ey up nev stay positive matey and plod on like you said there’s always some poor bugger worse off it be bloody reet. Drugs help 😂 so take what docs offer you snap there hands off he he. I’m 32 and feel like I’m 60 this happened more or less over night just rolling with it and having a laugh at my own expense. Swap yer brace face for a shit eating grin pal we’re all still here. Peace of aht brother ✌️


doubleo7hud
1 year ago

Brave face not brace 😂 Face decking autoerrect I mean correct and Fecking 😂 😂


neva
1 year ago

Hi,

Michelle – For sure, just suppressing some thoughts, seems like the correct thing to do 😉
Interesting what you say about it gets a little tougher to keep your chin up after a while. I can totally imagine that, perhaps the strain of being chirpy takes its toll a little. Will try and be on my guard for that.
The not over-doing it thing is interesting. I’ve always been a lazy bugger, never really been into over-doing it at all, but looking back in recent years, not sure how much I could blame MS. Maybe not at all? I know my wife has teased me over my clumsiness at times, so it’s better to now realise that definitely had something to do with MS.
The increase in compassion for people you may previously not have realised had a problem, yes. Get that. It’s easy to tut and roll your eyes at someone getting out of their car parked in a disabled space and think that they look OK, but you really don’t know what inner turmoil they may be in. Cheers!

Doubleo, (if I may call you that?), you did make me laugh! Not sure auto correct can ever cope with Yorkshireisms 😉
All the best to you mate, as well, take care!
Nev


tracyd
1 year ago

@neva

The diagnosed by accident and publicly known from Day 1 I can relate to.

On a Monday at the start of September 2014, I was sitting in a meeting at work with my boss and collegues when something went pop in my head. One minute I was fine the next I was in agony, I’d collapsed on the desk holding my head and I screamed. After about 45 seconds it dialled back some to where it felt like a chronic migraine that had appeared out of nowhere but it didn’t go away – by Thursday I’d had enough, nothing worked to lessen it (except wine). I saw my doctor and was told it needed to be monitored, if it got worse to come back.

On Friday whilst doing the shopping the whole world went gray …… I nearly passed out in Tescos and was told to go to the out of hour’s service at Basingstoke hospital. I was immediately admitted; they thought I might be having a brain haemorrhage.

Fast forward three days, a lumbar puncture (well 8 attempts and the 9th successful) and a CT scan. They had ruled out a Brain Haemorrhage, they were also pretty keen to rule out my having had a Stroke, and YAY it’s not a Brain Tumour either. But there were ‘shadows’ in my brain that looked a lot like MS – oh and do you know it looks a lot like you’ve had Viral Meningitis ?? (apparently this is not the nasty Bacterial one – Viral Meningitis is a bit like nasty Flu).

A few MRI’s, another lumbar puncture (done by my wonderful Neurologist in 1 go) 3 days of a steroid drip to reduce the golf ball sized inflammation in my brain and hey presto you have a diagnosis of Relapsing Remitting Multiple Sclerosis.

To be honest, it was a relief, all the other things had ‘fatal’ options on them and MS really was ‘The Bright Side’

Work were kept informed all the way through, the screaming and head holding freaked them out a lot.

For me – well I’m probably best described as a bit of a control freak …….. actually a lot of one …….

I went to war against it right from the start, by April 2015 my sight was failing, my legs were too, needing the bathroom was a terrifying race against time, almost my entire body had lost sensation along with a whole host of other MS fun stuff……..

I’m 45 (my ‘stage age’ is 27), I have a strange sense of humour and MS can feck right off. I don’t fight fair I fight to win – And I did win thanks to a treatment available on the NHS …. life for me is ‘normal’ (well as normal as anything ever is in my strange little world) my symptoms have all receded and my MRI’s confirm I have no new lesions, my old ones have melted away and Ihave no disease activity at all …….. and if it ever comes back well I’ll kick it’s ass again !!!

My blog details from 33 days before my Lemtrada start date and through the whole journey so far. Please take a read at:

http://www.tracyslemtradajourney.co.uk

Year 1 of the blog is also available on Amazon as an easy to read eBook for £1.99 with all proceeds coming directly here to the nice people at SHIFTMS as it’s a registered charity.

https://www.amazon.co.uk/dp/B01GE1V00M

You have a friend request, if you need someone to talk to I’m happy to share contact details xxx


neva
1 year ago

Blimey, that sounds awful!
Had a few minor headaches, nothing like that though, so far.
Can relate to wine as a painkiller but my wife starts moaning which can ruin the painkilling effect 😉
I was even lucky with my Lumbar Puncture because it went well, no headache and a lovely day out really! A work colleague picked me up and we went for a couple of pints afterwards. You have to try and turn things into a positive don’t you?
It must seem weird to some that MS seems like a good one, and I know it isn’t “actually “, but yes, you’re right, it could’ve been worse. And hit when I was younger.
I see you’re a fighter.
I’ve been wondering about diets? Did you have any thoughts on the subject? I might wait until I’m told to do one, but there seems to be a school of thought that dairy really might not be good.
I shall have a look at your blog, and perhaps write something for myself too, but I’m really not that funny. Maybe I could do it in rhyme? 🙂
Thanks for your thoughts, have a terrific evening, mine is being spent at this moment about to put a 400 metre long train through the washer, in a few minutes!
(Work have been great so far, couldn’t ask for better at the moment)
All the best,
Nev

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