When is a relapse not a relapse?


19 July 2022

Thermometer

Have you ever been told you’re having a pseudo relapse? In this blog Helena from the MS Trust finds that something that feels like a relapse might not be a relapse after all.

Have you ever been told you’re having a pseudo relapse?

I remember my first time very well! It was back in 2007, I’d just celebrated my 30th birthday and had started to experience the dreaded MS hug. I was new to MS, about 7 months since diagnosis. I’d read about the MS hug, so I thought the stitch-like feeling in my ribs probably was MS-related.

To make things worse, I also had a stinking cold, and the right-hand side of my torso was starting to feel totally numb. I contacted my MS nurse as I was walking home in the rain, feeling rather miserable, and voiced my concern that I was having a relapse

But she said, "I can hear you’ve got a cold, and sometimes that can make symptoms flare up. You’re probably just having a pseudo relapse. Go home and rest!"

Huh, I thought, I’ve never felt this before. It was actually quite scary and painful, not to mention weird, with all the feeling gone on one side of my torso. When getting dressed, it felt like I was putting clothes on someone else's body not mine!

In the end, it turned out that it actually was a genuine relapse as it lasted for well over a month after my cold had cleared, and I got treated for it. But ever since then I’ve felt that the term "pseudo relapse", for something that actually feels very real, is a bit odd!

Rising temperature

As I’m writing this on the hottest day on record in England, I’m actually having a pseudo relapse at this very moment. In my right arm and leg, I’ve got a burning, crawling, fizzy, tingling sensation, and they feel like they’re half asleep. I know this is due to the heat. When our core temperature rises our nerve signals slow down, and in areas that MS has previously damaged, old symptoms can flare up.

I spoke to neurologist Dr Nikos Evangelou about this in our MS Trust podcast earlier this week when we recorded an episode on heat sensitivity and MS.

Existing infections

But it's not just the heat that can make this happens. As I’ve already mentioned, back in 2007 my MS nurse thought my symptoms were brought on by me having a cold.

Other infections, such as a urinary infection (UTI) or chest infection, can cause a similar response. I struggled with vertigo once only to find out I had a UTI. In fact, vertigo always seems to affect me when I come down with a lengthy cold. I’m also prone to sinus infections, and if that happens, I can pretty much expect vertigo to set in too!

Immune response

Pseudo relapses can also sometimes be brought on by an immune response to a vaccination, like the flu jab. At the MS Trust we were contacted by several people worried about worsening symptoms and relapses after receiving a Covid vaccine. Again, your core temperature tends to increase when you have the vaccine and symptoms may occur. 

Funnily enough I felt perfectly fine, apart from some fatigue, after my three vaccine injections.

Working out

Pseudo relapses can also sometimes be brought on when exercising. Again, your body heats up and so existing symptoms might rear their ugly heads. I spoke to Nick Clarke, on the MS Trust podcast, about MS and exercise. He’s previously had optic neuritis, and he said he sometimes struggles with that eye after a run, especially in the heat. But it goes back to normal quite quickly after. Drinking iced water before and after exercise is recommended, if this affects you.

Of course, this can still be very scary. They may call it a pseudo relapse, but it’s still impacting on your life and, especially if you’re new to MS, this can be upsetting.

How do you know if it is a relapse or a pseudo relapse?

As I am now quite a bit further into my MS journey, I can often tell now if something is a "real" relapse. You start to be able to recognise the signs. Like today with the extreme heat. 

But there are definitely still times when it isn't clear. That's when a chat with my MS nurse can help.

So what is a MS relapse?

A relapse is defined as: "the appearance of new, or worsening symptoms, which last for a period of 24 hours or more in the absence of an infection or change in your core body temperature. Also, it must be 30 days since your last relapse."

However, even with that definition in place, it isn’t always clear cut. I caught Covid at Easter and felt rather yucky. Suddenly, for the first time in my life I experienced trigeminal neuralgia. It wasn’t pleasant at all, a shooting pain in the side of my face. It can be a symptom of MS, but the nurse who prescribed me antivirals said that she’d heard of Covid triggering trigeminal neuralgia in people without MS too. It lasted longer than two days, but it went away once I took the antivirals. 

I don't think my MS team classed it as a relapse, even though it was a new symptom and lasted more than two days.

Is my pseudo relapse still real?

I guess what I’d really like to say with this blog are two things:

  1. Sometimes a relapse isn't actually a relapse – and that is generally a good thing. It doesn’t mean my disease modifying drug (DMD) is failing me, I don't need steroids, and I will feel better quicker.
  2. A pseudo relapse can be scary, painful, worrying and what you’re experiencing is still very real. And yes, it can feel upsetting when the word “pseudo” gets bandied about. But maybe it’s just a poor choice of word. I’ve heard a few people refer to it as a mini relapse and maybe that describes the situation better? What do you think?

Whether it’s a real, pseudo or mini relapse you’re entitled to feel whatever you’re feeling, and it’s always good to inform your MS team or call the MS Trust helpline if you’ve any questions about relapses.

If the pseudo relapse is brought on by an underlying infection, it’s important to get that treated anyway, so it’s always good to keep your GP in the loop too.

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