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First relapse, feeling really upset and overwhelmed.

Hey lovelies. Just as the title says really. I was diagnosed with relapsing remitting MS 2 and a half years ago. I’ve been having weakness, spasms, and nerve pain in my legs since last week. I’ve tried to ignore it until I went to my GP today who called my neurologist and they’re both in agreement I’m having a relapse, my first one. I’m so so upset. I’m scared. I have so many questions and I don’t think anyone can answer them. I also have a 9 month old and everyone is having time off work to help me so now we’re financially struggling as well. I feel like a burden, a crap mum and just generally useless. I’m not sure the point of this post. Just an offload I guess. Xxx

Hello Char Poor you. You’re not a burden, not a crap mum, not useless either. Unfortunately you just happen to be a mum who has MS. That’s what’s brought you down. You’re quite right, it’s upsetting, it’s scary and worrying. But you’ve done the right thing by seeing your GP quickly. Who has done the right thing by contacting your neurologist (lucky you, to have a good sensible GP!). Have you talked to your GP about the possibility of taking some high dose steroids, to bring the relapse to an early end? If the symptoms started only a week ago it’s worth considering. Steroids aren’t nice things to take, they have their own side effects that can make you feel worse before you get better, but in my opinion, they’re worth a go. Have a look at https://www.mstrust.org.uk/a-z/steroids-methylprednisolone for more information. The worst thing about steroids is that they’re a bit unreliable. Sometimes they work brilliantly, within days bringing your relapse to an end, other times they take longer and sometimes they just don’t help. But, the best time to take steroids is when the relapse has just begun. It’s during this period that the inflammatory process is still underway in your nervous system. And the point of the steroids is they reduce inflammation. But make absolutely certain you don’t have an infection (like a UTI) or a virus (eg a cold) before taking steroids. Because they reduce your immune response, any infection or virus can go bananas. Even if you decide against steroids, I do hope your relapse ends soon, and that you get complete recovery from the symptoms. Once the relapse is over, if you aren’t currently on a disease modifying drug (DMD), then think about getting on one. Now you’ve had a relapse, you will understand why avoiding them, or at least lessening their effects is important. Talk to your MS nurse or neurologist about them. Best of luck. Sue

Hi Char

Sorry you’re having a rough time of it, Well done for posting something, it’s good to offload. Better out than in! Everything you’re feeling is very common though. One of the joys of this illness is the uncertainty, and it can be really unsettling. That’s especially true when you’re fairly new to it, like you are. As you get used to things, you may experience things like denial, anger, depression. They’re not fun, but they are normal, and you’re not the only one.

Like Sue says, steroids are the usual treatment for a relapse. I always have a good response to them, and start to see an improvement within a week.

And as to your unanswerable questions, try us! Chances are some of us will know, or be able to point you in the right direction.

Take care

Dan

The pattern seems to be that during pregnancy the m.s. ‘behaves’ itself but sometime during the next year relapses are more likely - then things settle down. Keep things in perspective - you’ve been ‘on the blink’ for just over a week - things will probably settle down.

Hey Char,

You are not a crap mum. MS is rubbish, not you!

Sue is a fountain of good advice (she has helped me loads - thanks Sue!).

I just wanted to reach out and say we are here if you need to talk. As a mum with MS, be kind to yourself. Try and rest as much as possible (not easy with a 9 month old I know).

Wishing you all the best,

Shaman

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MS is the burden, you and your family are the everyday heroes who will find a way to manage each new “normal”

Being scared is pretty normal, but you will be able to move on. Your family will give you the focus and energy to go forward.

All the best

Mick

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There is nothing underlines the grim realities of having MS like a relapse - they are never welcome visitors. I am sorry you are feeling so low. There is nothing wrong with feeling that way - you have plenty to be sad and fearful about just now, and not much MS experience to draw upon in terms of knowing that you will find a way to deal with whatever comes along . Take heart: that will come with time. I think your priority now is to see what the experts say about (1) getting this relapse under control and (2) what they they decide is best to do by way of keeping future ones as mild and as few and far between as possible.

Good luck.

Alison