This is my first time writing on the site, I was hoping someone may be able to give me a few words of wisdom! I was diagnosed with rrms late September and shortly afterwards followed with a bad relapse which I am still struggling with, I have gone from being very active to currently needing to invest in a walking stick to support me when walking and I can’t drive! I was given a dose of steroids 4.5 weeks ago but haven’t seen any improvement as yet, not feeling great in general very frustrated and find myself getting upset at times but trying to hide it from my 4 yr old daughter! Have I progressed to spms already or do I need to just give my body time to get over this relapse? I have now been signed off work which I feel awful about, but my left leg is painful and just won’t work!
Hi Lgaston,
Sorry you find yourself here, but welcome anyway!
First off, not everyone ever becomes secondary progressive, and of those that do, it’s usually at least ten years from onset. I’m sure I read this week that new data shows the average is 15 or more. So the odds of you “turning” progressive less than two months after diagnosis are negligible. Besides, the transition to progressive is gradual. It doesn’t happen in an instant like that. You’d probably have to go at least a couple of years without relapses, but with continually declining function, before any neuro would stick their neck out and say yes, this is now progressive.
So I don’t think that’s something you need to worry about for now, on top of everything else.
It sounds like, just as you say, what’s happened is you’ve had a bad relapse. Possibly triggered by the stress of being diagnosed. There is little conclusive evidence about stress, but many anecdotal reports cite it as a relapse trigger.
I think you do need to allow your body more time. I don’t want to dishearten you, but symptoms of a relapse can linger for months, so it could be a good while yet, before you know the full extent of your recovery. It’s much too soon to conclude there won’t be a recovery, as it’s still early days. I believe the “average” duration of a relapse is about 5 or 6 weeks - but it can be significantly longer or shorter. If you relapsed late September or early October, you’re only just about hitting the average now, and have a long way still to go before all hope of improvement is lost.
I’ve had a relapse lasting a year before, and I’m not sure they can’t last longer still…
Hope this helps,
Tina
Greetings
We will all have different stories, but I am rr, diagnosed in 1995 and had a horrible debilitating relapse almost immediately, followed by another soon after which both improved over time to almost normal - and then nothing for quite a few years. Then it all hit the fan in 2003ish but still I have often wondered if I have benign ms because after all these years I can still get by unnoticed if I try. Lately a left leg weakness has been dogging me with a slight limp but certainly in the mornings I will seem typically fine.
Give it time, yours may settle in the same way. I remember in 1995 thinking I would be down for the rest of my life but the relapse did subside.
Time. Good luck.
Mark
Hi Tina Thank you for your advice I felt it would help hearing from someone who is experiencing the same/similar things! Guess I need to give myself some more patience like I do with others! Thanks again Liana
Hi Liana, and welcome to the site
I just wanted to say that it’s still very early days for this relapse and the steroids will still be working away (they stay in our system for weeks). So try and be patient; hopefully you’ll start to see little improvements soon and then one day you’ll wake up and realise that, actually, you feel better! It can take a while though, so hang in there!
You should probably consider not trying so hard to hide it from your daughter. The MS Trust do some brilliant booklets for kids, one of which is aimed at young children. It will help you to explain that mummy isn’t able to do some things sometimes, but everything’s OK. (Kids pick more things up than we often realise, so it might be best to give her an explanation that she can accept and not fret about.)
I hope your symptoms start to ease off very soon.
Karen x