What is a Relapse? Relapse Series Episode One

Nicola: Welcome to our series on relapses. I'm Nicola Graham and today I'm talking with MS nurse advisor Jane Bridgman. For many people diagnosed with MS, relapses will be a part of the MS journey. They're unpredictable, they can be a small blip, or they can be life changing. So if you want to become better informed about relapses, then please stay tuned.

In this, our first episode in the relapse series, we're discussing what is a relapse, how can you identify if you're having a relapse, and how can you prepare an action plan.

Very warm welcome, Jane. Thanks for coming in today. This is episode one on our relapse series and we're going to be discussing what is a relapse. Let's jump straight in. What is a relapse and do all people who are diagnosed with MS experience relapses?

Jane: Really good question, Nicola, and thank you for having me today.

Not all people with MS will experience a relapse. The majority of people are diagnosed with a type of MS called relapsing remitting MS. That's about 85 percent of people. So those people may experience relapses, and that is the nature of the illness that they have. Other types of MS include secondary progressive MS, and we see less relapses in that phase, but secondary progressive MS can definitely be active, and so people can experience this relapse there.

And in terms of primary progressive MS, we're not so much expecting relapses, but there can be times where the MS is more active than others. So in conclusion, it will be mostly people who have relapsing remitting MS, and then sometimes people with secondary progressive MS. In terms of what a relapse is, it's an episode of new Neurological symptoms, basically.

And so, we're talking about symptoms that are new for you, that you've never had before, or perhaps a return of old symptoms. It needs to last at least 24 to 48 hours, usually, before we start thinking this could be a relapse. It needs to be a month after the previous relapse to be considered a new one as well.

So, we can't say, This is having another relapse and you had one last week, that would be considered the same one. And we also need to rule out that it's caused by anything else. Okay, so

Nicola: it sounds like it's very common. Yes. And, um, so for many people it's, it's going to be part of their, their MS experience.

So what might make somebody think they're having a relapse?

Jane: So usually it's when new symptoms or sensations start to become apparent to you. That's when people start thinking, um, okay, I think something might be going on here. And that's when people start to pay awareness to what that symptom or sensation is and then kind of start to observe what happens next.

Nicola: And that new symptom, Jane, that could be a totally new symptom or it could be a previous symptom that somebody has. Um, had before as part of their MS. Is that correct?

Jane: That's right. So when we're talking about what symptoms could happen, there is a really long list of common MS symptoms, if you will. Some of those could be, for example, uh, visual changes, which is commonly optic neuritis.

It could also be changes to speech or swallowing. It could be sensation changes. So, somebody may have numbness or tingling, prickling, pins and needles. Uh, and that could change over time. So, someone might wake up with numbness in their foot and then over the day it travels up to the knee and then by the next day it's kind of in their hip area.

And so, that's very typical that a relapse would actually start at one level and, and kind of change. It also could be a change to function or strength. So, you may notice that your... Grip isn't as strong and perhaps you've dropped your morning coffee. And it also could be things like the way you're able to move around or even continence changes.

So there isn't a specific list of symptoms that happen in a relapse and symptoms that don't, but it's more about What's happened for you in the kind of way that it presents and then that's the benefit as well of checking in with your neuro team is they will be able to clarify if these symptoms are relapse related or perhaps they're not because that's another thing we need to think about.

Nicola: Well, that leads me on to the next question. If it's not a relapse, what else could be happening? What could it be?

Jane: Yeah, so there's something called a pseudo exacerbation, which basically means a fake relapse. And we don't mean fake as in what you're experiencing isn't happening. It's more that The symptoms that you're having aren't caused by a new lesion or new damage or a genuine clinical relapse.

A pseudo exacerbation is where you have a return of old symptoms or a worsening of your current symptoms and the key difference is the cause. So, in a pseudo exacerbation, the cause is something environmental, whether it be it's been very warm weather where you are for a couple of days, could be heat intolerance caused by exercise, because when we exercise, we raise our core body temperature, and that is enough sometimes to temporarily worsen your symptoms.

Nicola: If it's through Exercise, for example, Jane, temperatures increased. Does that mean then as my core temperature decreases, the symptoms go away or might they persist? MS.

Jane: They should go away. So, often with exercise, if you are noticing that that causes some heat intolerance, for example, that isn't something that should stick around.

So, if you're noticing that those symptoms are still present a day later, that's when we would start having questions. Also, a fever, for example, can raise your core body temperature and worsen symptoms. Any other infections or illnesses as well could be medication side effects. So they're just a few things that can aggravate your MS, if you will, and kind of change the way that your symptoms But the key thing to know is that just because someone has MS, it doesn't mean that everything that happens to their body is caused by MS.

So that's why it's a really good idea to check in with a doctor because we don't want to miss something that's totally separate to MS that needs assessment and treatment, just assuming that it's a relapse.

Nicola: Okay. And it sounds like to some extent, time is, is a great factor in determining. if it's a relapse or if it's a pseudo exacerbation.

Okay, so is a person able to diagnose their own relapse or is it something that needs the neuro team, your doctor or your neurologist?

Jane: Usually we wouldn't expect someone to be able to diagnose and manage their own relapses all by themselves. Most of the time, they can be quite subtle and a little bit nuanced, and so it does take that expert eye, such as the neurologist, the MS nurse, or your clinic, to have their input.

Every now and then, it'll be very obvious. So you'll very much be able to say, okay, I think I'm really having a relapse here. But quite often, People are a bit unsure and that's totally normal. So you're, as the person with MS, we're expecting that you're able to notice that something's different and then communicate it.

We're not expecting you to manage this whole thing at home without calling anybody.

Nicola: Okay. So, if a person suspects they're having a relapse, they're called their neuro team, what happens next? What tools are used to diagnose, for example?

Jane: So there's three main tools that can be used and they're not always all three required.

The first one is your history and presentation. So what you're saying has happened and how you're presenting to them at in that time. And they're also going to look at your clinical history to see Are those symptoms new for you or did we notice them before? Another one will be a neurological exam and that's when a neurologist or an MS nurse will do a physical exam with you and ask you to kind of follow their finger and hit your knee with a little hammer and do those kinds of things to check your reflexes and sensations.

That can be particularly helpful because it can sometimes pick up things that you may not have even noticed. So you might be saying, look, I just have changes in my sensation in my hand, but perhaps when they do the neurological examination, they can notice actually a change in strength as well. The third thing that can be helpful is an MRI.

It's not always required, but an MRI can help to pick up new activity. But a relapse won't always align with new activity on an MRI, so helpful but not always required and an MRI can also rule out other things as well. OK.

Nicola: That's good to know. Um, I guess a burning question for many people is how long is a relapse going to last?

Is it a day? Is it a week? Is it a month?

Jane: What are we expecting?

Nicola: Yeah, what are you expecting?

Jane: Yeah, so it is different for everyone. Certainly it wouldn't be days. We're not kind of expecting a relapse to start on Monday and be home and done by Wednesday. So, usually a relapse will last four weeks. if not months, and probably more so with months.

The, the pattern of a relapse, if you will, is not that it just starts and continues on in a straight line and then finishes. It's more like driving up a hill. So, there's a kind of an increasing in symptoms and it gets to a peak level, like when you drive and you're at the top of the hill, and then the recovery starts, where you're kind of coming back down that other side.

And that recovery stage can be much longer than it took you to actually develop the symptoms. So, the relapse may develop over time. say, a week or two, but it may take several months for that recovery to happen. And that's a difficult thing because we can't really tell you, okay, Nicola, well, you've reached the peak level of recovery for this relapse.

That's done.

Nicola: And also, I'd imagine that some people's relapses would be very minor and perhaps even barely noticeable, and other relapse episodes would obviously be more serious. So, I'm imagining there's quite a variation in relapse.

Jane: That's right. So, it's not uncommon for when people are diagnosed with MS, then they have that filter that they know what to look for, for them to say actually, Now that you say that, I went to the hospital a year ago to the emergency department with really bad vertigo and my hand was numb and I was just told it was X condition and that I was fine and that I could go home.

But now that I know I have MS, my neurologist has actually told me that was probably a relapse. So sometimes they can be quite subtle and other times it could be something that, uh, You barely noticed yourself, but that wasn't picked up, but you are absolutely right. Sometimes they can be more than mild and quite noticeable.

So there is quite a variance. It's not always going to be the same level, going to be different for each person, and each relapse will be different. From what you're

saying, it's useful to factor in that there'll be a recovery period and that that. That will take varying amount of time. Absolutely. Yeah.

Nicola: And how can people prepare if they anticipate that having relapses might be a part of their journey with MS?

Jane: Right. So it's hard to prepare in a sense for a relapse, but knowing what it could be and what you're going to do about it, I think is very empowering. And so that's why we really encourage people to have a relapse action plan so that when it is that.

You happen to wake up or you're out and about and you think, Oh, I think we're on here that you know what you're supposed to do and you don't have that level of panic because it is going to be something that's a bit frightening for you. But if you know what to do, then it's going to give you that sense of comfort.

So knowing who you're supposed to call, um, how to contact them and roughly how long you may expect it. for them to get back to you. And that's just about understanding expectations. So if you're my MS nurse and you work at an MS clinic, if you say to me, Jane, it probably will take me a day or two to get back to you, that's really helpful for me, because if I've called you on Monday and left a message and I haven't heard back.

And it's Thursday afternoon. I know that you said it's supposed to take about two days. So I know maybe I should call again, for example. But if you say it's going to take me a week, then I can think, well, what if I can't wait a week, for example? And it wouldn't be common that it would say, a nurse would say it'll take a week.

That's just an example. So, um, it's good to know, um, how to contact them. As we said, what you can expect in terms of return contact. And also who you should contact if the first person is not available, because sometimes your doctor or nurse may not be available. It may not be a clinic day. You may see a private neurologist who's on leave or not available.

So knowing what to do there. And then also, If you are worried and not feeling comfortable to wait for them to get back to you, what you're supposed to do in terms of going to a hospital. And for some people, their local hospital may not be where they get their MS treatment. Especially for people living regionally and in rural areas, they may see...

a doctor on MS clinic in the city. And so it may be four hours drive for them to get to that emergency department. So if they know whether to go to their local hospital or how to work that, that can be really helpful. So they're the main things that you would be looking at in a relapse action plan. And then separate to that, there may be some practical concerns that you may have.

So, for example, I have had a client before who does live regionally and she has lots of animals that need caring for. So, if she's not on her property and she has to go into hospital, that's something she needs to think about. Now, you can't put meals for a horse in the freezer and, and have the horse take them out, but you may have a neighbor that you chat with and just say, look, if I ever wasn't here, would you be able to help me feed my cat or walk my dog?

Or is there someone that can drive your kids to school? And You may not want to disclose those things to people, but even just having that thought in your mind about, okay, it would be this and this and this that I would have to think about if I wasn't able to do it, how I would manage that.

Nicola: Great. That's really good advice.

And so thanks, Jane. And I look forward to the next episodes in these series and we're going to look at other stages in the relapse journey.

Jane: Thanks. Thank you, Nicola. And I think it's important for people to know that there are also more resources on this. So we've just had quite a brief overview on this, but we do have a great resource on our website called Managing a Relapse.

And that does go into more depth about what we've discussed as well.

Nicola: Okay, great. Thank you. Thanks, Jane.

Thanks for listening today. And of course, we'd love to hear from you. You can email us msconnect at ms. org. au. You can send us feedback. You can send us some topics that you'd love us to record a podcast on. And you can just call us 1 800 042 138. Thanks for your company and look forward to next time.