Hi everyone, I’ve been lurking on here for a few weeks, but only just joined so thought id say hello! In the past 6 weeks or so ive gone from ‘normal’ to having and tingly/numb torso and tingly/numb/hypersensitive hands to waking up one night not able to feel my legs and not able to walk properly. Was admitted straight to hospital and had tests and MRI scan that showed up lesions on my spine and brain and told that this ls the first attack of MS. (Looking back now i have had strange skin sensations, but you dont think its anything serious at the time, only now am i linking these sensations to MS) To begin with i was feeling quite positive and that ‘it could be worse’ but now im really starting to worry about the future (worst thing to do i know!). Im in a job i really love, trouble is im only temporary, but before all this happened was hoping to be kept on. Now im worrying about this really throwing a spanner in the works for it being held against me for the possibility of ever being kept on. Uugh. Sorry for the really long moan-y post, needed to get it off my chest. Shiv. Xx
Well, of course you are quite right - it could be worse. But it is still pretty rubbish news for a person to get, and it is completely natural for you to be concerned about the future. Please do not see this as a failure of ‘positive thinking’! It is OK to feel pretty bad about an MS dx. I am sorry that you have all this to deal with.
There is never a good time to get at dx like this, but it is something that happens to many of us just as we are establishing ourselves as young adults, planning ahead, building families and careers and so on. There are good treatments out there for relapsing remitting MS (I assume that this is what you have?) and these can give a person the best chance of getting on with life with as little disruption as possible. There are legal protections in the workplace and elsewhere that help keep the show on the road even if MS is causing some trouble. I won’t pretend to you that MS does not close of some options in life, and make others more difficult to make use of. But life goes on, and many people can just get on with things much as normal for a long, long time.
Do not beat yourself up for worrying. That does not mean that you aren’t coping. It is just normal. As you get over the initial shock, things will settle down. You wil start to feel calmer about it all, and your natural optimism will reassert itself. You just need to give it a bit of time.
I hope that your employer is sympathetic.
Good luck with it all.
Hi Alison, thanks for your reply. Im feeling more optimistic today, (even though my symptoms seem to have flared up slightly). Im waiting to see the neuro at the end of the month, i assume it is RRMS too, as i have only had one recognised attack, but am waiting for more info from the neuro. I thought MS could only be diagnosed after two attacks, which i queried with one of the doctors when i was in hospital, but he said that my MrI was conclusive…?! My employers are being great thankyou, and im on a phased return, its nice to have a bit or normality back! S. x
It is a hard dx to have at first but then you start to realise how to manage your own body. Different people find that different things work for them, I know that if I am having a slight flare up I can push on through but this has been something that I have had to learn.
Once you have all the correct information and a good support network who will work through it. I still have days when I get cross that I have RRMS but they just push me to not give in.
I am still recovering from my first ever attack and I was told I could not be diagnosed after only one episode so instead it has been called clinically isolated syndrome. I’ve been off work for 3 months so far. I’m glad your work are being good about it.