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What is classed as a Relapse ?

Hi everyone, this is my first post on the new site, so hope i get it right…!!

Just sitting here having a rent to myself after my Neuo Appt earlier this week and wondered exactly what is considered as a Relapse - both in terms of what Ms’ers class a relapse as and i guess what Neuro’s class as a relapse ??

Sorry if that sounds like an odd question but i seem to be stuggelling to get any sort of help and im beginning to wonder if perhaps I just dont explain myself very well in appts with Gp’s / Neuros. Ie - I had a long list of Symptoms / Questions listed out for my Yearly review on Tues and yet 20 mins later I was out the door and i’d only mentioned 2 things…

I don’t actually want to take the DMD’s at this stage but I find it so bl*dy annoying that all im ever told is “well see what happens” - so this time I really pushed the point that I was concerned that my last MRI _a yr ago) showed new lesions and yet 9yrs since dx ive still not been offered a thing. I was told I still don’t qualify for DMD’s etc and I didnt get refered for another MRI…???

Its confusing as in the past when ive had Optic Neuritis and had steroid treatments - it’s obviously classed as a replapse but if I have a few weeks where im wiped out / have burning patches / weak arm etc etc - i dont go to GP as I just get onwith and hope it disappears but then if i dont get to mention these thngs in appts they always think im fine and only have me down as having 2 relapses in 9 yrs - both times of which i went in for steroids…

So my question is 1) so i know if its me not explaining hings very well and 2) i guess so I can try and measure myself againt others (I KNOW) thats kindof impossible as its different for everyone but as i dont know anyone with ms I need some sort of benchmark…

The only thing I did manage to get at the appt was an offer of an MS Nurse which is obviously a good thing.

Hope that all makes sense - otherwise I guessed I may have answered my own question…!!

Thanks for reading

Alison

This is what it says in Polman et al (2011): the latest version of the McDonald criteria for diagnosing MS: “The Panel considered again what constitutes an attack (relapse, exacerbation) and defined this as patient-reported symptoms or objectively observed signs typical of an acute inflammatory demyelinating event in the CNS, current or historical, with duration of at least 24 hours, in the absence of fever or infection.”

This is what is says in the NICE guidelines: “An acute episode, often referred to as a relapse, is a neurological event that occurs in people diagnosed with MS that lasts more than 24 hours.”

So, basically, a relapse is a new neurological symptom that hasn’t been brought on by a virus or infection that lasts at least 24 hours.

The problem is that the criteria for DMDs is two “clinically significant” relapses in two years. That “clinically significant” phrase isn’t explained anywhere, so neuros and PCTs can interpret it any way they like.

My guess is that you’ve had a lot of relapses, but that your neuro doesn’t consider them clinically significant.

Hth!

Karen x

Hi Alison

I have only had MS for about two years and as far as I was/am concerned I have only had one attack or relapse and that was optic neuritus. This was my first sign of having MS and since then I have only had a few tingling sensations, headaches etc. Nothing that I could say was a relapse.

My consultant was keen for me to start on DMD’s and so I had another MRI and this showed new lesions. Therefore they started me on Rebif. I still can’t say what the relapse was as I did not notice one. My advise if you want to start on DMD’s would be to request another MRI as even though your symptoms may not be classed as a relapse, you may still have new lesions.

I hope this is of some help and it makes sense.

Sarah

I agree its hard to know whats what. I have had two relapses, one faded over six weeks, then the other one started in June and I’m still having lasting symptoms six months later.

I would definitely start seeing your GP every time “something” happens so that its all on record.

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Thanks for the replies, really nice to read other experiences/opinions etc. I was really surprised that my first 4 mri were kindof the same then the last one showed new ones but he said as its my 1st one on nhs they would use that as benchmark and i guess ignore all the others. Doesnt make any sense to me as to me thats worrying that its progressing but i guess ill “see what happens” as suggested. Still nice to read other experiences so thanks very much Alison

The problem with MRI is that what you can see depends a lot on the settings used. That means that it’s not sensible to compare scans unless you know that the settings and the scanner strength were exactly the same. So, although what the neuro said sounds like a cop out, it’s pretty standard.

One of the classic signs of MS is “clinically silent” lesions - basically lesions with no observable symptoms. So new lesions count as disease activity even if there were no symptoms.

MRI scans are expensive so most neuros don’t tend to send their patients for new ones unless they are reconsidering treatment. If you think you might change your mind about DMDs, you need to start getting your relapses on record. If your MS nurse attends your neuro appointments, she/he could be a good ally at the appointment - confirming that you have been having relapses since you saw the neuro last. (Forgive the cynicism, but I doubt that most neuros read medical files very thoroughly before the patient enters the room, so a “live witness” is much better than hoping that the stuff the nurse has recorded actually gets read.) You’ve still got that “clinical significant” hurdle to overcome though.

For what it’s worth, I saw my neuro in November. I’d had vertigo throughout October, but it was manageable and I told him that it had been pretty mild. He wrote that I’d had clinically insignificant vertigo in the letter to my GP. So, my guess is that “clinically significant” means disabling, debilitating, needed help with - that kind of thing.

Hth.

Karen x

Had a discussion on this with my Neuro on Thursday.

His statement was that a relapse must last for 24 hrs, and that in his experience, they would typically last up to a month.
Hence: an “off-day” is not a relapse, but several days of extreme fatigue/lassitude probably is.
In my case, I don’t have optical problems, but have had one recent episode of vertigo. That was just under 24 hrs, even though it was over two days, so it probably does not count.

My Neuro does actually the notes from the MS Nurse - he actually had a copy of the transcribed notes on his desk, with points highlighted on it. This is why I want to stay under the care of this team, rather than transfer to a nearer hospital (halving the round trip by car), and getting a local nurse. I know the local Neurology Nurse, and have a high respect for her (she visits my wife) but she is an all-round Neurology Nurse, not an MS specialist.

Said Neuro is of the type who says “Can’t help you with X”, “Can help you with Y”. “Symptom A is not neuropathic pain, but symptom B is - and this is what we will do about it”. Maybe I’m very lucky, but you can see why I tend to trust this team.

Geoff

Thanks karen & geoff My neuro pretty much said that actually, he had a doctor he was training in with him and thats pretty much what he explained to him My neuros really good and i dont have any complaints with him at all i guess i was just surprised as ive not been on the nhs long and every other times ive seen a neuro ive then had an mri after but maybe thats cause i was paying !!! I guess it does make sense its just frm a selfish point i try and gage where i am by the mri but yes i do realise that it doesnt make a bit of difference to the outcome Im really pleased he asked if i wanted to be referred to the ms nurse as im sure that will be a much better route as i never bother going to my gp re ms things Thanks again Alison

Not sure if i had a relapse,my optical issues lasted a whole day but my paralysis was for a weekend. MS has discussed with neuro and a further MRI is being arranged and then we will take it from there. Still waiting a diagnosis, the waiting…

Hi everyone. I’m new on here and hoping to get some advice…I have rrms for 5 years. The past few days iv just not been myself (optical, physical and general “just not muself” I’m at my drs today to rule out infection…but then what? Spoke to ms nurse and she said that because of the added stress iv been under for the past several weeks, it sounds more like a flare up. Does anyone here have “flare ups” that don’t go into a full blown relapse? Appreciate any replies

Deborah - a lot of times I feel the same - not myself, washed out, tired beyond belief, pain behind my eyes - comes and goes without knocking me totally off my feet - rest up and ride the waves of MS…

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Thank you Redman…the joys that is MS! I’m sure I’m not the only one who gets more symptomatic during Christmas!

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I have absolutely no idea what a ‘flare up’ is supposed to be. It’s not a term used by any neurologists. They talk about relapses. Yes, an infection can cause existing MS symptoms to feel worse. As could stress. But it seems to me that the word ‘flare’ is something fairly new, invented by MS nurses.

It could possibly be a small relapse that has only sensory symptoms, for which steroids would be overkill.

Sue

Hi sue. My nurse said she would recommend steroids if it gets any worse… (it kind of is as the days are going by!) Iv to see how I’m feeling tomorrow and take it from there…wish it would just hold off until Santa’s been haha! Thank you sue for replying x

Hi

Don’t forget that steroids are most effective the earlier in the relapse you take them. So if the symptoms are getting worse, why not get a prescription sorted so you can take them as soon as you think you want them? Plus, Christmas is going to delay everything. (And do you want to end up taking the nasty things over Xmas? It might depend on what kind of Christmas you have.)

I recently had a nasty relapse and started steroids on about day two. They worked better than ever before.

Just make sure you have your urine tested before taking steroids (my GP surgery are very lax about checking). Steroids plus a UTI, or in fact a virus, like a cold, could be nasty.

Hopefully it will resolve without the need for them.

Sue