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how long do relapses last?

Hi all, I know this is such a stupid qu, and it varies wildy but this one has been going on for a month now, the ms nurse is on hols so cant see her for a couple of weeks, hopefully be better by then, but typing this, my hands feel like lead, in fact i feel i must surely be wearing a lead suit, and brain fog…ridiculous! but in the past she has said this doesnt count as a relpase, but if its loads worse than on a good day, and im housebound for a month(im a self/emp photographer and can barely lift my camera!!)surely this is a relapse? I have never been offered any dmds or steroids and i was dx 9 yrs ago, but im really struggling here!! Im struggling to even compose this message so that it makes sense, so apologies if it doesnt!

I started taking vit d and vit b12, but would anyone recomend any other good vits or supplements? help!!!xxxxxx

Hi Sophie, sorry to hear you’re having a tough time. I was diagnosed in June and am on Tec so I don’t really understand why you are not on DMDs or being offered any help. My relapses have varied eg one week of double vision to weak legs which is about 5 months now. But I’m not sure if that is still a relapse or just what I’m left with after a relapse. I’m still learning this MS thing! Can you contact your neurologist?

Hi Sophie. Here is a link to a recent post from Anitra. I found what she had written very educational. It might answer some of your queries. Good luck. x

Hi fishgoose! the reason i have not been offered any dmds was as whenever i saw the neuro/ms nurse they felt that i didnt have typical relapse symptoms, but I disagree, over the years I have just “got on with it” and although I am used to a reduced level of energy and ability to do stuff, generally, these patches where it gets loads worse are to me, relapses. So I probably have a fight ahead to get listened to. But I shall try!!! So you still have weak legs now? Bless u, thats a long time, I do hope it lessens soon for you, do you work? xxxx

Hi Poppy thnk you so much for this link, I shall have a look right now xxxx

Very informative link thank you Poppy.

Sophie, I’m getting used to things that hang around lol! The physio I have is wonderful. I’m still working but that may change very soon as Occuptaional Health have put the writing in the wall pending my next MS neuro appointment in September. I’ve had fantastic support from another member of this forum helping me to come to terms with the impact of MS and work. They don’t mix very well! The main barriers for me are the walking and fatigue. My job is very challenging and non-stop and I can’t keep up anymore. Sad. Are you working?

Its a mad disease isnt it…

I was only diagnosed in April and started Tec on Sunday.

No one seems to be able to explain what a relapse is, any symptoms i have the nurses say " its not ms".

I know its a very difficult condition to explain with all cases being different.

I have been reading this week they are trying to prescribe meds as soon as possible, so you should definatley be given something, makes me cross how each area of the country is so different, just depends on the neuro i suppose.

Linda

For those seeking a definitive, clinical assessment of what a relapse is, i would draw your attention to the very nature of MS, and the extraordinary variability that permeates every single aspect of the condition;

the symptoms; the severities; the age of onset; the prognosis; the efficacy of this, that or any other medication; the effects of behaviour / environment / genetic inheritance; basically anything and everything (aside from the fact that the illness sucks big old bawls) is so varied, it can be said to be tailored to the individual.

thus, the annoying non-answer to questions such as, “how long does a relapse last?” is the ever dependable, “how long is a piece of string?”

it’s the not knowing which proves to be the greatest ‘unraveller’ i think.

in order to try to derive some sense of what might be going on within me, i usually take the professionally sourced expectations with a pinch of salt, and indulge my ‘inner vibe’ instead.

when ‘things’ (whatever they may be) start to feel ‘different’ to normal (whatever that might be), i take note, usually in a journal. New symptoms are listed and i make sure to note the ‘things’ that resolve / improve just as eagerly as those which do not.

it becomes easy to see, whether ‘things’ are accumulating or falling by the wayside. and of course the passage of time is dutifully recorded also. a fuller picture can be derived from recording any activities performed or meals consumed.

i understand that a relapse needs to be something ‘significant’ (whatever that might be), which lasts for more than one day. distinct relapses can be counted if such significant events occur more than 30 days apart.

for what it is worth (from my own experience and nothing more), my last relapse lasted six weeks; that is that new symptoms introduced themselves almost daily for about four weeks; for the final two weeks, severities varied and some body parts recovered. basically, ‘my inner vibe’ at the six week stage told me that nothing new or nastier was happening. and so it was. that relapse was during the summer of 2014 and i still have remnants of some of the symptoms which first struck me. i doubt they will ever go away.

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I think a relapse would affect sufferers for longer periods of time in Scotland than in England. This is because Scotland has longer winters than England and they are more harsh. In fact, i would imagine that some Scots long to be down south in England during a Scottish summer.

I I were to visit Scotland (I never will) then I would have to sleep at sea-level and near to a HBOT centre. From watching weather forecasts, it seems to me that rain has fallen for most of this year in Scotland.

Hi thank you all, please forgive me for not replying to each but my brain and fingers are protesting!! but i really apppreciate all the answers and thoughts from everyone. In my opinion, i am definitely having a relapse, and when i do get to see the nurse I shall be very clear on that. bit scary that i have had it for at least 9 years, and never had any meds(but i tried LDN and dietary changes but tbh, no difference.) we shall see what gets said this time…I will make sure my husband is with me so he can back me up.

fishgoose(fab name!) I stopped work in 2003, was having too much bad health altho i didnt know why at the time. I then went back to college, with the aim of taking a degree then training to be a fitness/sports therapist(oh the irony ha ha!!)as i used to be a fitness fanatic! however i found the studying too much, i then tried Open University, still too much.

I then took up photography classes as i really needed something of interest in my life, as we all do! that was about 8 yrs ago, and I am now a self employed photographer (as I can fit it in more with my health, edit the photos in bed, that kind of thing!)HOWEVER i am not doing it at the moment, just too unwell, I have a job on saturday evg which I am going to force myself to do, but with the brain fog its difficult, MUST REMEMBER TO REMOVE THE LENS CAP!but I will find a way! I just cant wait for this patch to be over and done with…so it sounds as if you’re having a tough time work wise at the moment, what do you do if you dont mind me asking?

sophie x