Pseudo relapse or not?

Hi all,

I got in touch with my ms nurse (I’m lucky to have a very good one)because I was concerned I was going into a relapse. For 2 months my symptoms were getting steadily worse with several new symptoms I hadn’t experienced before and old symptoms coming back that I haven’t had for quite a while. I began to feel quite ill. She assures me this was a pseudo relapse because it all started after I had a cold. This started shortly after having had another brain MRI which thankfully showed no new lesions so I was fairly confident it wasn’t a relapse but I thought pseudo relapses were what you got when, for instance, you get overheated and then it clears up after about 24 hours, not something that lasts 2 months. I know pseudo means ‘not actually but having the appearance of’ so does this make it a harmless if not painless attack? I,m on the way back ‘up’ again now so hopefully return to my original health soon.

Your experiences would be appreciated

Suex

Hi Sue,

I’m inclined to agree with you. I think a pseudo-relapse (if any) would have been during the cold (perhaps due to slight fever), but I can’t see why there would have been one afterwards.

Respiratory infections, however, including colds, are known to come with an increased risk of actual relapse, for up to about six weeks afterwards. So whilst I think there probably is a link between the flare-up and the cold, I don’t quite get why your nurse is insisting this is a pseudo-relapse, and not an actual one.

On the scale of things, it probably doesn’t matter very much, as it wouldn’t affect what action would be taken, unless eligibility for DMDs (or a different DMD) were contingent on another relapse, in which case yes, it WOULD be important to distinguish between real and pseudo, as it might affect what treatment you were offered.

Tina

Exactly Tina, I am just very confused because to be quite honest I don’t really know what they class as a relapse, or, if it is a relapse, is it important to be on my medical records for the future for DMDs? I just feel mixed up at the moment. All i know is that I have felt absolutely pants for two months.

Suex

Tina,

Just to clarify, does a new symptom such as swallowing problems that arrives during the cold or virus…that then remains with you when the “pseudo/or relapse” has passed and can be clinically proven by the relevant consultant formalise it as relapse?

Golly its a real minefield!

Sue - I’m sorry that you’ve felt pants for 2 months. It seems such a long time when you feel poop. Hope you start to perk up soon xx

Hi Gillian,

I’d say a pseudo-relapse, by it’s very nature, is temporary, and doesn’t result from new damage, so any symptom that persists long-term couldn’t have been from a pseudo-relapse.

And I don’t know if there’s any absolute rule about this, but personally I’d be sceptical whether a pseudo-relapse can cause NEW syptoms at all. If it’s not causing any new damage, then where would the new symptom come from? I understand it aggravating existing symptoms, or causing a flare-up of old ones you haven’t seen for a while. But I don’t understand brand new symptoms, as to me, that would imply new damage somewhere.

I don’t know if my experience is typical, but I don’t think I’ve ever had a new symptom just from having a cold or something. I just feel cruddier than usual, with symptoms I already know about. If you get a symptom you’ve never had before, which sticks around, I’d say there’s no “pseudo” abut it.

I’d have thought a neuro would have no difficulty accepting it as a relapse. Mine “accepted” pre-diagnosis relapses I’d only ever told him about, that he hadn’t witnessed at first hand, because I hadn’t been under investigation back then. We didn’t get into a load of hair-splitting about whether they were real or not, and there was no test he could do retrospectively, to prove they were or weren’t. He was prepared to accept my account at face value.

Don’t know if this helps?

Tina

Tina brilliant response and it certainly makes sense to me so a big thank you.

I was lucky that my GP got me an emergency referral back to the neuro who then made immediate referrals to ENT… so just waiting the MRI results now but suspect new damage as you suggest…and the ENT consultant said the damage was caused neurologically so I don’t see how it can’t be a new lesion.

It really does help to ask questions for me personally, just to rationalise in my own mind what I think happened to me as I’ve felt so overwhelmed by this illness that I now need to make some sense out of it.

So again thanks very much!

Hi Sue,

I have been sick recently with flu and pneumonia, which definitely caused a flare up of a very nasty pseudo-relapse, and my neuro said it could take me months to recover neurologically from the symptoms. But I didn’t get any new symptoms in this relapse, only old ones. However the old symptoms are much, much worse than they have ever been before and my neuro said they could have caused new permanent damage even though it started as a pseudo relapse.

Confused??? I sure as h*ll am. Apparently although it started as a pseudo-relapse because of the high temperature I was running, it then turned into a real relapse. Because of the infection my immune system went into overdrive trying to fight off the bugs and then munched into my myelin some more as well. Bloody MS. Really sucks that you can’t even have flu and pneumonia without getting really sick with MS symptoms too. Which is why getting UTIs under control is so important, why MSers are on the free list for the flu jab etc etc.

But it does suck that even having something as minor as a cold can sometimes kick-start a whole relapse too. It won’t always but it will usually cause a pseudo-relapse for the duration at least. :frowning:

Hope you feel better soon,

Belinda

Thankyou for your valuable responses girls.

Belinda, sorry you have been so poorly, hope you are on the mend.

Reading your replies and especially the comments about new symptoms made me think maybe my new symptoms are not new at all, just so mild I didnt really take any notice of them. Trouble is when you have any sort of relapse, pseudo or not, everything seems to kick off and you end up thinking ‘whatever next!!!’ I’m even more confused now, perhaps I had better stop overanalyzing and get on with the onwards and upwards route!

Suex