Last reply 6 months ago

So, I’m managing well on Tysabri, being completely symptom free.

On the one hand – I appreciate every moment more and am very grateful that I feel “normal”, and hope it will stay that way for a long time.

On the other hand – there is this uncertainty, I lived with Ms symptoms for a couple of years, then they all disappeared just to reappear again. After steroids, Tysabri and absolutely a shit of 2018, subsided again. I got a taste of MS and it makes me kind of anxious about planning things, developing my career and so on. It’s not a paralyzing fear, but it’s hard to shake off the feeling of “yeah, next year it can all come back”.

How do you deal with it?

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6 months ago

btw, of course my neuro (a lovely guy) is overjoyed that I don’t report anything and recommends a celebratory scotch but I believe he has a different perspective 😉

6 months ago

@gijs , it’s not just having MS, life itself is unpredictable. No-one knows what tomorrow will bring.

You can always find a reason not to do things.

It’s very much a case of Carpe Diem, as @chezy17 will tell you. 😉

6 months ago

Don’t worry so much,I was diagnosed back in 1983 and I am still doing fine. I am on Tysabri too it is a good drug.

6 months ago

You just get on with it!! No-one knows what will happen tomorrow let alone next year so why worry?
I’ve had some pretty crap hands dealt to me over the last couple of years, a marriage breakdown, a diagnosis and a relapse! One thing I do know is that it will not stop me getting on with life and doing the things I want to do! I don’t plan and that’s the beauty of it, I look for the rainbows, my kids, friends and family. I’ve been to Rome and Paris, pitched a tent with the kids on a camping trip and I’ve done so much more. MS doesn’t have to be the end of your life, it just makes you realise what’s important!
As for careers, I’ve just started a uni course and I’m 36!!

Live your life, do the things you wanna do and don’t let it stop you!

It’s a good motto to live by @stumbler


6 months ago

This is such a good post – what you need to hear when MS prays on the mind xx

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