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Remission - what does it feel like?

Hello all,

The title says it all really. I’m just wondering what remission is like and also how would it show up on an MRI? I believe lesions can repair themselves to some extent - do repaired lesions still show up?

I’m guessing the answer is that is it different for different folks.

My usual symptoms have improved, they are still occurring but less frequently (although still strong when they do happen) but I am sooooo tired! I’m finding it hard to accomplish tasks which wouldn’t have even considered difficult previously. Walking, lifting, generally moving about (!) completely take it out of me and sometimes bring on my symptoms again (albeit in the short term). It’s not normal tiredness, it’s not something I have experienced before.

…and while I’m here… that concrete leg thing - I’m trying to think of how to describe it - to me, it is affecting the top of my legs mostly. It partly feels as though I am wearing a pair of jeans which are two sizes too small, I just have no flexibility and am currently walking around like a robot (yay…my 4 yo son thinks it’s cool). In fact when it started suddenly I thought I must have either overdone the chocolate intake or overdone the tumble drying so I changed out of my jeans into some nice loose shorts only to find my legs still felt the same. But as well as that they feel numb and achy and above my the top of my knees or half way down my thigh it feels as though I have a tight band squeezing me at times. Does this sound familiar to anyone?- preferably someone who knows what they have got!

Ohhh I don’t know…maybe I’m just losing the plot.

Today is a good day, although looking at a lot of other things that are going on - not related to this - it shouldn’t be, but it is so WOOHOO!

I hope you are all having a good Sunday too. x

hi snorkle

i was diagnosed with rrms in 2008 and i know exactly what you mean. i get concrete legs and sometimes they do this weird shuffle like i’m trying to moon walk!

i’ve been told to strengthen my legs but when i try they get so heavy after exercise. i went for a sport massage, it hurt like hell but the heaviness was eased.

keep that positive attitude, hun.

i sing spasticus autisticus when my legs play up. you’re probably too young to know that song - it was ian dury.

carole xx

Thanks Carole,

I know Sex & Drugs & Rock & Roll - do you think that will work just as well?

Do you still have the concrete legs and tiredness when you’re in remission?

I have a pretty physical job, my legs should be fairly strong already but now I seem to have very little proper strength in them. A few weeks ago I couldn’t get myself into my transit van very easily - I had to half drag myself in using the seatbelt as an anchor and to add to the fun the dog thought I was playing some sort of doggy game and decided to bark like mad leap all over me as I was making any progress. Goodness only knows what any onlookers must have thought!

MRIs for people in remission and people relapsing often look exactly the same. One difference can be that relapses can cause enhancing lesions to show up if the scans are done with contrast, but they often don’t. So it can be impossible to tell if someone is relapsing or not from their MRI.

Lesions can only be partially repaired, but sufficiently well enough not to show up on MRI any more (and sufficiently well to mean that symptoms improve, but that fatigue, heat, stress, etc can flare up those old symptoms).

If you did an MRI of someone in remission and then did a new MRI when they were relapsing, you would probably find either a new lesion(s) or an enlarged old lesion(s), but nothing is straightforward as MRI is not perfect and small lesions can be missed. If you then did another MRI after they were back in remission, you might find a lesion or two have gone, but you could also find that some lesions have gotten smaller or that there is no change whatsoever.

All of this means that symptoms are WAY more important than MRI!

As far as what remission “feels” like, what a difficult question! I guess remission for me means feeling the same most days (symptoms are familiar albeit they vary day by day). Also feeling very much better than when I am relapsing. I usually know I’ve gone into remission when I wake up one morning and realise that I feel “better”. I’ve still got loads of symptoms, but I’m managing them OK (with meds, experience, etc) and I can live a relatively normal life.

Your concrete leg sounds like it might be spasticity. It would be worth you seeing a neurophysio - they might be able to help you with it. Meds might help too.

If you chuck everything available at MS, life can be remarkably doable!

Hth!

Karen x