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First relapse since dx - so lost!

Hi all,

A few days before Christmas I was confirmed as having a full relapse - my first since diagnosis almost 2 years ago. I had a feeling it would happen, since I decided to change from Copaxone in September as a result of breathing problems, and am waiting to start Tecfidera.

I have just finished a five day course of Methylprednisolone and have seen and felt no change in my condition. My skin is still incredibly hypersensitive, I have numbness in my back and legs, and most concerning of all, my hands feel like they are constantly on fire and I have little movement ability. I have never suffered with any problems in my hands before, so it’s a little scary. I don’t know whether to push myself and try to use my hands as normally as possible, or try to not use them at all.

I feel so lost. Does anyone have any advice they can pass on? I have relayed all the information to my MS Nurse, but as I’ve never had anything like this before I want to help myself as much as possible, and get rid of this burning sensation!

(As a note I’m on 600mg Gabapentin a day for nerve pain).

Thanks in advance!

A

Hello Amy

It’s scary not knowing what is happening with our bodies and how to best treat them to make the various bits that are currently bent and broken work properly again.

And your first proper relapse is probably more frightening than when you were first diagnosed; you think you’d got your head round this MS business then something happens to make all your certainties fall apart again.

What the steroids do when you’re having a relapse is try to reduce the inflammation by damping down your immune system reaction to foreign ‘invaders’ (in actual fact what is not a foreign invader at all, but our immune systems don’t recognise friendly bits and mistake them for enemy invaders).

The problem with steroids is that a) they come with their own side effects that make you feel like crap, b) they don’t always work, and c) even when they do work they can take their own sweet time in putting things right.

So what this means for you is that your relapse is open ended. No one can predict how long the symptoms will take to remit. But remit they will, possibly not 100%, but often very slowly and sneakily until one day in weeks or months to come, you’ll suddenly realise that your numbness is better and best of all, your hands are back to where they should be. Even when you get only incomplete remission, you’ll find that other bits compensate for the deficits. So your new ‘normal’ gradually replaces the old ‘normal’.

Your question about rest and pushing things, it’s really a bit of both that’s needed. At this stage, more rest than exercise would be best most likely. You could ask for some physiotherapy help, but not all physios are great at hands. I remember asking for help with hand function a few years ago and being told a couple of things, but nothing very useful really. However, I did see an occupational therapist earlier this year who gave me some Theraputty (it’s a bit like plasticine but comes in different densities) and some exercises. So give it a couple of weeks then see if you can get a referral to physio or OT. In my area we have a Community Neurology Team, this encompasses both and is connected to the MS nurse service so ask your MS nurse for advice.

You could also ask for some different drugs. If the Gabapentin isn’t helping with the burning hands, ask your GP for some Amitriptyline, it’s really for use at night as it can make you dopey. But it does help with burning type neuropathic pain.

I hope this helps a bit. Other people will have their own views too that’ll help.

Sue

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Hi Sue, thanks so much for your reply, it’s super helpful and a massive comfort at such a weird and scary time. I thankfully didn’t feel any worse on the steroids - small mercies - but I do hope they have helped a little bit somewhere along the line! My MS nurse seemed to think if they didn’t work, I’m on the slow route to recovery. My job isn’t really designed too well to have a long recovery period!

I see my physio next on the 8th Jan, so I’ll muddle through with my hands until then.

A :slight_smile:

MS trouble with hands is awful. That and vision/hearing trouble have freaked me out more than anything else that has happened so far. At their worst, my hands were pretty badly affected, but time and recovery restored a good deal of lost function. It took a while though. Please give the steroids time, and try to be gentle with yourself while you wait. You aren’t going to muscle your way out of any MS relapse, try as you might! But just gently do what you can without strain to keep things flexible and supple and you will be doing all you can do to help things along. Good luck for a good recovery. Alison

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Sue & Alison,

You are both brilliant with your support and advice - Just thought it needed saying.

Amy, I hope you feel a bit better soon.

Mick

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Hugs. So sorry you are having a relaps. Fingers crossed that things improve for you soon.

Thanks so much everyone for you love and advice - going through this for the first time is just so much harder than I had ever would have imagined. I know it’s going to be a slow road to get everything back to where I want it to be, but going from being super duper active to nothing overnight is a nightmare. Ah well! A :slight_smile: