I think I'm having a relapse

MS Plus acknowledges the traditional custodians of the land this podcast is recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders past and present.

Nicola: Welcome to Episode 2 in our series on relapses. I'm Nicola Graham and I'm joined today with MS Nurse Advisor Jane Bridgeman.

Welcome Jane, welcome back. We're looking at Episode 2 now in our relapse series, which is, I think I'm having a relapse. What do I do? So, Jane, could we start off with a reminder of what a relapse looks like? So, a bit of a checklist to get started.

Jane: Yes, so There is a bit of a checklist for identifying a relapse. We're looking at the occurrence of new symptoms, and it could also include the reoccurrence of old symptoms or a worsening of your current symptoms. Timing is important. It needs to be at least a month after your previous relapse, and usually the symptoms need to have lasted for at least 24 to 48 hours before we can start making the call of it being a new relapse. And finally, we need to rule out other causes. So, we need to rule out any kind of underlying infections or other things that could have caused a change to your symptoms.

Nicola: Okay, so I now think I'm, I'm having a relapse. What do I do next?

Jane: Don't panic. That's the first thing to know. Don't panic. Take a deep breath and start having an awareness of your symptoms. What are the things that are making you think you have a relapse? I very much recommend documenting them in some way whether that's writing notes in your phone or on a pen and paper or on a calendar if you will writing down what has happened When did it start? How bad is it? Sometimes we may be familiar with rating symptoms out of ten. So, you may have heard people say if zero is no pain and ten out of ten is the worst pain you've ever had, what does this feel like? And you could say seven. But your seven may be different to my seven. And so sometimes it may be difficult for a doctor or someone else to interpret that.

So, I find it helpful when documenting symptoms or explaining them to other people is to relate them to function. So, it could be my balance is affected, but I'm able to move around the house comfortably and do what I need to do. I just feel a bit dizzy and that's different to my balance is so bad that after I click to turn the kettle on, I actually have to brace myself whilst I'm waiting for the kettle to boil. And when I'm walking around my house, I have to hold on to things, so I don't fall, versus I actually am unable to stand by myself without falling over. So that's a bit more descriptive than kind of 8 out of 10, for example. So that may be a, something that helps you when you're documenting your symptoms. So, after you've not panicked and written down what your symptoms are, then you want to contact somebody. And so that would be your treating team, which could be a neurologist, it could include an MS nurse or even your MS clinic, depending on where you go for your MS care.

Nicola: Okay. And am I or the person experiencing the relapse expected to diagnose it themselves or what happens there?

Jane: No, we don't expect you to diagnose it yourself. Sometimes they'll be quite obvious and so it's okay if you say I'm having a relapse. Yes, I'm quite sure this is what it looks like but quite often it will be subtle or a little bit hard to tell so it's okay when you are contacting your treating team, you're saying, I think I might be having a relapse, I'm not sure. Or I've got new symptoms, what do you think? So just starting that conversation, your role is to notice that something has changed and then communicating it with your team and it's their job to help you figure out what that means and what to do from there.

Nicola: I've written down the symptoms. I'm wanting to call for some support. Who do I call?

Jane: Yeah, so depending on who you're under, you may see a private neurologist, in which case, however you normally contact them. Whether it's going to their private rooms or perhaps you may have their direct phone line, but not always. It may be that you see an MS clinic and they'll have contact details to call them. Usually there'd be an MS nurse at a clinic, so you may be able to directly contact them. Or perhaps, you have other contact details that you're supposed to use, and ideally you would have asked your treating team before now, what am I supposed to do, who am I supposed to call?

Nicola: Yeah, it's a number you want to have readily available, isn't it, and a number, or a process that you want to be clear, this is who I'm going to call if, you I do have a relapse.

Jane: That's right. So, if you've got all that prepared, then that's really easy to go. You get that instruction out from the side of the fridge or from a note saved in your phone. But if you don't, that's okay. We can't go back and change it. That's when you can make some calls to either the hospital to kind of find out or you could even call us at MS Connect and we may be able to help you find those contact details because they're sometimes a little bit tricky to find.

Nicola: What I'm noticing is we don't call a GP. So, what's the GP's role in this situation?

Jane: Yeah, so they don't often have the same tools as a neuro treating team, so it wouldn't be common that we would advise you to go straight to your GP because they're not likely to be able to kind of do that MRI and neurological exam and compare that to previous MRIs and things like that. They can be useful to rule out other conditions. So, I know that we discussed ruling out a pseudo exacerbation, so ruling out a urine retract infection or a chest infection or something like that and they can check your blood pressure and just make sure that you're okay. So, it can be helpful, especially if they're, you know much more readily available to you than your treating team. But going to them first could sometimes be the long way around. So not always required to go to them first, but it's okay if you do.

Nicola: So, what I'm hearing is you really want to make sure that your treating team, your neurologist, your MS clinic whichever pathway you use, and it's your neuro team that you want to be in contact with.

Jane: That's right because ultimately, we want to inform them that something has changed, because then that will trigger an assessment, maybe a review, maybe we need to look at the disease modifying therapy that you're on. And that's not anything you have to panic about now, but there's a few things that need to happen. So that's why it's beneficial to let them know, so that they can get the ball rolling on organizing what they think needs to happen.

Nicola: Okay, so we're at the stage, we've called the neurologist, the MS nurse or the MS clinic and we're waiting to hear back. What if you felt that you needed more urgent care and you're, you're not able to wait for that return call? What do you do then?

Jane: It's a really good thing to pay attention to your body. So, if you don't feel like you're safe to kind of wait it out and just be comfortable at home, then act on that. It's not commonly going to happen that you need urgent medical care and MS relapse is not a medical emergency majority of the time.

But if you do need more urgent care, then that's when we'd be looking at going to the emergency department, which is going to be open 24 hours a day, seven days a week and have people in there that can assess you and then start treatment or keep you safe at a bare minimum until you get that formal review.

Nicola: So, Jane, can you tell me then what would be examples of symptoms that might need that more urgent emergency department trigger, if you like.

Jane: So, there's probably a few main ones. One would be changes to your vision, in particularly vision loss. So, if you can't see, that's a problem. We want to get that into hospital. And if you are finding that your day to day functioning is quite impacted, so you're actually not able to safely take yourself to the toilet, or have a shower, or move around, so you're not safe actually at home or quite comfortable. You may be in excruciating pain, for example so it's mostly about how it's impacting you, not necessarily the symptom, but vision's probably the exception to that. If you do have changes to your vision, you would want to act on that quite quickly.

And I suppose the other thing is how your mental health is coping. So, it may not be something that another person thinks is a significant symptom, but if you are very distressed, if you are very upset, if you are feeling very panicked or anxious or not okay, mentally not safe, that’s another great reason to go to the emergency department.

So, when we're talking about MS symptoms, quite often they're going to be physical changes in your body that are related to a relapse, but it's going to change how you feel emotionally, and that's okay. And please know that just as important to get treatment for as well.

Nicola: So, you've spoken a little bit about waiting, and if there's, if there's, an urgency to get treatment immediately. Is it that the longer you wait, it's more problematic? Is a MS relapse something that's going to benefit from being treated sooner rather than later?

Jane: Not really. Not so much. So, there are some medical conditions where we want to act very quickly. Examples would be a cardiac event. You want to get someone to hospital as soon as possible without a doubt. Also a stroke. The faster we can get you to hospital after a stroke and the faster we can kind of bust that clot and get you safe, the better your recovery is going to be. That is a different situation to an MS relapse. So, once an MS relapse has kind of happened or developed, it's not like we need to quickly get in there and put out the fire or the fire extinguisher.

Nicola: Okay, that's good to know. So there's, there's room for a bit of time and consideration.

Jane: There is we don't want you hanging out at home just by yourself for days and weeks on end. But it's not a jump in the car thing, we have to race to the hospital, run a red light kind of a situation. It is okay to wait and there will be times where you'll speak to your treating team and they'll say, okay, Nicola, well, see how you go tomorrow and then I'll give you a call in the afternoon and we'll see how things have changed and whether we need to bring you in for an assessment or maybe some treatment.

Nicola: Okay. It's good to have that expectation cleared. And I think that's a really important point. Okay. So thanks, Jane. Lots of really great advice again. And I hope that this will help people to put together some clear and calm steps to take when they realize they're having a relapse.

Thanks, Jane.

Jane: Thank you, Nicola.

Nicola: And of course we'd love to hear from you. You can email us [email protected]. You can send us feedback, maybe you could send us some topics that you'd like a podcast recording on, or you could just call us 1800 042 138. Thanks for your company and I look forward to next time.