Last reply 3 weeks ago
Dear All

I have never posted/joined anywhere before so I hope i am doing this right.
I have a question regarding relapsing I’m in a relapse at the moment how long do relapses generally last? Any information would be greatly appreciated from a very confused human being.

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vixen
3 weeks ago

Hello @sam1, and welcome aboard! I’m Sure our guru Stumbler will be along in a minute to advise. I see you are only diagnosed this year, so take heart, you will feel better. Once you come to understand how this thing affects you, life will become easier and you will understand the ins and outs of our condition. In my own case with my onset relapse, I felt terrible for two months; symptoms came and went during this time. Within three months I felt much better and started my own routine of recovery but some people have relapses that last a few days. All things are possible! The main thing is to rest to the max, and keep stress and stressful situations to a minimum. Also, think about diet, and not overdoing exercise. But remember that you also need to enjoy yourself and treat yourself good. All the best x


bernadette
3 weeks ago

Hi sam1,
i’ve wondered the same thing myself, as we’re all different doubtless you’ll hear a variety of answers. In my case mine have all lasted 8-9 weeks with the worst symptoms going as quickly as they arrived in the first place.


stumbler
3 weeks ago

@sam1 , relapses are unpredictable, so there are no hard and fast rules. We’re all different.

There’s a lot of information here, which may help :-

https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses


gijs
3 weeks ago

a week, a month, many months, depending on whether or not you get steroids/which part of your cns has been affected etc. etc. My first relapse took almost 11 months to resolve (I didn’t get a steroid treatment, tho).


sam1
3 weeks ago

Thank you for the responses, if i give some background to how my relapse started.
I started having spasms or stiffness in my legs. The only way I can explain how it feels, it’s as if you’re having a good old stretch in the morning when getting out of bed but you’re unable to stop from stretching. When this happens its difficult to move I try to ride it out I force myself to get up and move one leg at a time. This takes a massive amount of energy to try and control.
Its now been 18mths what started as just in the mornings has now increased to at least 4/5 times in the day and has moved into my lower back.
My consultant has classed this as a prolonged/grumbling relapse but I don’t meet the criteria for medication as this is my first relapse.
Can a relapse just keep going with symptoms getting worse with no end in sight? (Sorry this is so longwinded)


grandma
3 weeks ago

Its not longwinded at all. You are new to all this and haven’t even been diagnosed. You are in what we call’limboland’ the worst place on earth to be. We’re always here for a natter, a moan, a question, anything you want. And remember, as far as ms (even though it might not be) is concerned, there is no such thing as a silly question😍 We’re here to listen, answer questions if we can. Have you had steroids ( methylprednisolone) they are used for other things as well so giving them to you doesn’t mean ms necessarily, but it as Vixen says, you need to be kind to yourself, rest, treat yourself, don’t push on too much, you might be doing damage so be careful. You’re not on a DMT as such, but having steroids isnt precluded if you’re not on one so good luck👍


stumbler
3 weeks ago

@sam1 , this is either a prolonged relapse, an indication that you’ve got a Progressive variant of MS or your initial relapse has caused some permanent damage.

Have you had an MRI scan since this relapse “started”? If not, I would ask for one, to confirm what is, and isn’t, going on…………….


sam1
3 weeks ago

I pushed for a second MRI (First was done in May 2018 & 2nd in August) this showed no further disease activity, so do not fit criteria for disease modifying drugs.
I was given steroids 1g over 3days then pred 30mg tapering over 2 weeks. My symptoms stopped for the first time in 18mths for 3 days no streaching but then they came back.
What started out as small amount of stretching in my legs has developed into problems on my left side with continued involuntary stretching.
18mths ago my left foot did not drag behind slightly, i did not need to help lift my left leg up while geting into my car or bath. I know that some damage has been done but is it still classed as a relapse going on 18mths with the original symptoms still ongoing?
I know that MS is different for everyone i am trying to be paient and as postive as i can given my circumstances.
Thank you for all your kind response and links i have found them all very helpful.


maureena
3 weeks ago

Hi @sam1 have you been offered a lumbur puncture? If so and you your Neuro is willing to follow new updated criteria, then if it is positive you could be diagnosed without waiting on further relapse. I personally would be pushing for one. My first relapse at its worst lasted around 2 months but have ongoing symptoms on and off but no changes on mri. Limbo is not a great place to be, consider a 2nd opinion. I unfortunately don’t have a forward thinking neuro so wait and see approach is where I’m at. Have you been allocated an ms nurse? If not contact Neuro secretary and asked to be referred and keep her updated on symptoms between appointments. Hope you get answers soon.


maureena
3 weeks ago

maureena
3 weeks ago

@sam1 apologies for not reading correctly I see you have had a diagnosis of ms not cis. Hopefully you can push for dmt and link above is helpful. Wishing you well


stumbler
3 weeks ago

@sam1 , it seems that you could do with a second opinion. This is your right to request one and you’re spoilt for choice being in the capital.

Otherwise, you need to consider symptom management to help you.

A Neuro-physio assessment would be useful to consider your footdrop issues and whether any stretching exercise could help your spasms.

Additionally, Baclofen, a prescribed muscle relaxant should help with the spasms. However, you do need to find the right dose for you, to relax the muscles to avoid spasms, whilst not weakening muscles too much.

Your MS Nurse should be able to help with both the physio and Baclofen.

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