So confused about what a relapse is.

I had a visit to my neuro on Monday and he confirmed that he had info which I had given to my ms nurse in November 2012 detailing that I had been suffering some symptoms which I hadn’t had before. He asked me what symptoms they were which included burning scalp and soles of feet, also spasms in my left arm. Then he asked me how long the symptoms lasted. I told him that the burning could go on for 20 minutes at a time and had lasted in total for about two weekss. The spasms were more or less there all the time. Then he asked me exactly what my arm felt like ( he always asks this about the spasms I have in various parts of my body ) and I always tell him the same, that it feels like something is pulling and twisting inside of me. I don’t get jerks but the pulling etc always leaves me feeling sore. The neuro says he doesn’t think that I’ve had any kind of relapse and he doesn’t know if I’m getting spasms. So I really don’t know what a relapse is, I thought new symptoms which lasted lomger than 24 hours were relapses. How does one define a definite relapse and is it more likely that I have a different kind of ms than the rrms I was diagnosed with last year. I just find it all so confusing. Thanks

I may be wrong but any new symptom or flare up of old symptoms lasting longer than 24 hours, and a change in core body temp. Thats what I was told what a relapse was. I was also told by the ms nurse if a symptom lasts 24 hours write it down, if it lasts a week call him.

That should be WITHOUT a change in temperature - that’s because things like viruses and infections, which increase body temperature, can cause “pseudo-relapses”, all the symptoms of a relapse that go when the virus/infection goes. Neuros are mainly on the look out for relapses that they would class as “clinically significant” - basically disabling / debilitating. They aren’t too interested in less serious stuff. A lot of it is in the wording though. “For two weeks solid, my left arm felt like it was being painfully squeezed. I also had regular periods of burning in my scalp and the soles of my feet.” sounds more like a relapse even though it’s the same thing. Tbh, it doesn’t really matter unless you are on DMDs or want to be on DMDs (or unless you need steroids). Other than that, once we’re diagnosed, it’s all about symptom management. Karen x

Hate to say it Fudgey but Ive had loads of weird symptoms over the past 11 years and my neuro always said: no new presentation of relapses, even though my last mri said 6 more lesions? All I know is Ive slowed down mobility wise, feel stiffer, have more numb bits and get fatigued all the time, plus pins and needles now in both hands.

I dont think even neuros have a clue about relapses, think we know when something isnt right and is different from previous relapse, yet some wont admit to them being anything other than blips. Ive had ‘you got too hot’, or ‘you must have overdone things’? Strange that because my ms has definitely progressed.

Go with your own instinct, if it does what it says on the tin, it is a relapse - whether neuro says it is or not.



Hi Bren, This is what I don’t understand, it certainly feels to me that my neuro doesn’t seem to know much about ms, I just get that gut feeling that he sometimes doesn’t know what to say. The fact that you’ve got six new lesions surely says that you have had relapses? Are you on a DMD? I’m on Copaxone but I’ve only been on it 5 months so I’ve no idea if it’s going to help. I’m a bit scared of the future as I don’t claim any kind of benefit at the moment but if I ever have cause to in the future ( distant I hope ) then I can’t see the neuro/nurse supporting me as I don’t think he sees anything as a relapse unless as Karen says something really serious happens which I suppose may mean I collapse or can’t walk or talk or move for over 24 hours. Is that what happens to most people with ms when they have a relapse? You’re right when you say that temperature or uti’s are nearly always blamed…each time I have contacted my ms nurse she says have your urine checked or you must have got too hot. I wish that ms was a more predictable and understandable illness. Then at least you would know where you are with it.

I don’t bother telling my neuro unless any flare up stops me doing the major stuff like walking or using my arm completely and I certainly don’t go to my GP. I may log a bad spell and just mention it to the neuro so he can note it in my file when I have my annual review when him.

That’s because I find if I rest, I can get my legs going again after a few days or so whereas if I go to the GP or ring my nurse, if they think it’s a relapse they only prescribe steroids and I’m not in a hurry to have them again unless I can’t deal with it myself within a few days. If nurse or GP don’t think it’s a relapse they just tell you to take it easy anyway so it’s easier to just manage symptoms myself. I know my body better than them anyway …

There was one time when I described some symptoms to my neuro at annual review and he amazed me by logging it as a relapse, whereas I had just dismissed it as a ‘bad few weeks’! Either way, it makes no difference to the treatment, my nurse had seen me and prescribed amitriptyline for the symptoms but she hadn’t classed it as a relapse! Well, if they can’t agree, how the hell are we supposed to know?