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Relapse 3 days after diagnosis

Hi all I’m new to this,

I was diagnosed 4 weeks ago with RRMS (neurologist thinks I’ve had it for 5 yrs due to CIS 2014, dizziness, nystagmus 2018) 3 days after diagnosis I started with this sensory relapse which appeared overnight with no warning. Freezing cold from the waist down to my feet, altered sensation similar to being in a plunge pool. Prior to this I was exercising 6 times a week (high intensity workouts, weights, running … ) now 3 weeks later I’m struggling to walk upstairs due to stiffness and can’t get my head around it. Started steroids today which I’ve done through gritted teeth as I thought I could fight this disease. My life feels like it’s been turned upside down and I’m worried that it will never be the same again. Started Copaxone 3 weeks ago 5 days after the relapse started but I know this takes up to 6 months to get into my system.

Could this relapse have occurred due to the stress of diagnosis, the awful waiting game we all have to go through? Sorry I am just struggling to accept what is happening and that it feels out of my control.

Hello Try to remain positive, I know it is not easy when you go from being on top the world and then find yourself in a dark cavern. The steroids will help if you have just gone on them and you have never had them before. They did with me and I then went back to normal for 3 years Stress is a trigger with me, I had relapses when my son got divorced, my dad died and other problems with my waterworks. I have problems now with cold mainly back and head, wear a woolly hat all the time. Do not know anything about Copaxone, I have been on Tecfidera for 4 years and have no relapses since going on it unfortunately it was not available before I became disabled. Not sure about waiting 6 months for something to get into your system that is far too long. If my neurologist had acted quicker I would not be in the mess I am in today. Anyway less about my moaning I am just an old disabled man. Do not accept if there is no improvement in the next 2 weeks, insist on seeing your existing doctors or someone else. Bertie

Hello

You really are new to the MS world aren’t you?

What a *#@“= of an introduction to MS. ‘Here’s your diagnosis and here’s a relapse!’

I took Copaxone for 5 years and was just fine on it. I didn’t know it took 6 months to start protecting you from relapses, but with a bit of luck and a fair wind, you’ll be ok for years to come.

And if it doesn’t work for you, ie if you continue to have relapses after you’ve been on it for 8-12 months, then go back to your neurologist and ask to swap to something else.

The very best thing about Copaxone (for me at any rate) is the lack of side effects. I never had any. Just remember to rotate your injection sites. Go for the places with the most fat. For me that was my bum and thighs. My arms were too skinny and I hated doing my stomach, maybe that didn’t have enough fat either (I’d like that problem now - many years and meals later).

With MS, you’ll find that the best way to handle it is to take the steroids when they might do some good, to take a DMD (and change it if it’s not working), eat well and stay as fit as you can. It sounds like you’ve got a good start in terms of fitness anyway. The fitter you can stay, the better you’ll handle symptoms and relapses (if they hit you). But don’t try to tough it out. If you need to, rest. If you need to, take medicines.

It is horrible when it first hits you that you can’t control it, nor see into your future. But there’s no help for it, MS will do what the Fog it wants, when it wants. Don’t try to fight with it, MS will win. It’s like that, the bugger.

Sue

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Steroids are a weapon in your armoury, not an admission of defeat. It isn’t you -v- MS: it is you and all the forces you can muster -v- MS. (I don’t like steroids either, by the way, but needs must, and they do get the job done like nothing else.)

On the matter of other medicinal allies, I am glad you are getting started on a DMD. I wonder whether your neurologist has sat down with you and reviewed your DMD needs in the light of this new post-dx disease activity? In your shoes, I think I would want that discussion. I’m not knocking copaxone and the other old-style first-line DMDs - I was on avonex for 10 years post dx myself and grateful for it - I am sure it deflected a few bullets - but that was 20 years ago, and some newer and stronger DMDs have emerged since then. If I was dx now, I would certainly want to have a conversation with the neurologist about hitting the MS a bit harder from the start with one of the more modern and effective drugs. If you and he/she are confident that copaxone is the one for you and meets your needs then that’s great - your neurologist is the one who knows you and your circumstances and knows your MS. But I do think it is worth having the discussion in the light of this new flurry of disease activity.

I am very sorry that all this trouble has come to your door. It’s a difficult time, and I really feel for you.

Alison