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Long term CIS?

hi all

Havent been here for a while. Sorry I’m sure that’s bad form to show up when I need something, but I was around for a while in 2013…

Anyway, I had a diagnosis of CIS in 2013-14. One clear lesion on my spinal cord, one possible but probably artefactual at the base of my brain stem. Discharged March 2015 as I’d not had any further attacks (the first one was mainly sensory, some weakness). I told the consultant that I still get some residual tingling, brought on by stress, alcohol etc and was reassured that is normal.

In this heat I’m getting it a lot and I just wanted to check - should I be worried that this is the second attack coming? Or is it really normal to get ‘throwback’ symptoms after CIS?

grateful for any knowledge or personal experience anyone can share…

thanks so much

Hi Clare,

It depends on the extent of the damage, and how well it healed.

As I understand it, CIS is, in all other respects, like an MS - relapse - it’s just that it’s a one-off.

So I assume that, like an MS relapse, repairs can be imperfect, and you can be left with some residual damage, which can particularly show itself if you are stressed, hot, or have an infection.

Unfortunately, I cannot say for sure it’s not the start of something new, but I think it’s highly likely to be legacy damage from the original attack, which has been accentuated by the heat.

Hope this helps.

Tina

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Thanks Tina, that’s reassuring. When a new attack comes is it usually sudden? My first one was - I could tell you the time of day and the date precisely. Or does it vary?

Morning Clare,

I haven’t had that many “attacks” (relapses) and most of those I have had were pre-diagnosis, and thus went unrecognised - so it’s a bit hard for me to say, looking back, because I didn’t know what they were, at the time, and didn’t pay much attention, as weird as that may seem. I’d assumed some were bugs, and others were injuries, so it’s hard for me to tell how many genuine relapses I’ve ever had, let alone when they stopped and started.

Of the ones that seem fairly clear to me, including the one that led to my diagnosis, I think they came on quite fast, but not instantaneously. With the latter, I literally woke up with it one morning, but careful analysis of the previous few days revealed I had been feeling a bit more tired than usual, and off-colour, and had a few more aches and pains, so I think it was not quite as sudden as it seemed, and there had been a gradual build-up - just nothing you’d really recognise as being definitely ill.

I think it can vary between people, and even in the same person, but I think the general pattern is fairly fast onset (not necessarily instant) followed by slower recovery.

Dunno if that helps?

Tina