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How To Identify A Multiple Sclerosis Relapse

How To Identify An MS Relapse

For me, one of the most confusing things about Relapsing-Remitting Multiple Sclerosis (RRMS) was understanding if I was experiencing a relapse or not.

No one tells you what a relapse is and isn’t, well no one told me that is, and I’m sure I’m not alone. How do you know if you might be experiencing a relapse? And at what point do you seek medical attention?

When I was first diagnosed, I was only told that “if I experienced a relapse”, I had to let the neurologist know.

But what exactly was a relapse?

Is it when your symptoms come back?…That was my understanding of the definition of a relapse at the time.

A relapse is when I’m experiencing symptoms right?

Wrong!

There’s a bit more to it than that.In the first years with Multiple Sclerosis (MS) I knew very little except that my MS was of the relapsing kind, which means symptoms would come and go. And as far as I was concerned, if I was experiencing any symptom, then I must be having a relapse.

The very first time I thought I was having a ‘relapse” was when I had this funny electric shock sensation when I bent my neck. So I called the neurologist office and told the receptionist “I think I’m having a relapse.”

They got me an appointment for the next day, and when the neurologist asked me how long I had been experiencing this new symptom, I told him it just started yesterday.

He scoffed at me.

“If it’s still like that next week then come back,” He said as he showed me the door.

I almost was too afraid to go back later in the week when I was still experiencing the problem.

Since then I have learnt that when it comes to relapses, there is a lot I didn’t know.

So what exactly is a relapse?

What is a pseudo-relapse?

There are key medical criteria for a relapse such as duration of the symptoms, period since your last relapse and other causes for the symptoms. All these must be checked first.

These days before I make the call to my neurologist I need to go through a process of elimination to determine if I am experiencing a relapse. As I am not a medical professional, I always see my general practitioner so she can begin the diagnostic process.

But that’s not all… One day after explaining I was experiencing the resurgence of some old symptoms I was told I might be having a  pseudo-relapse.

What on earth is a pseudo-relapse?

The first time I was told I might be having a pseudo-relapse I got quite offended. I thought the doctor was implying that the symptoms I was reporting were not real. A Pseudo-relapse is a real thing, what it actually means is that you’re symptoms are not being caused by new or active lesions.

A Pseudo-relapse can be caused by a variety of reasons such as infections, fatigue or heat. And don’t be fooled by the name. Although an active MS attack is not to blame for the symptoms, experiencing a pseudo-relapse can feel just as bad.

How do I tell the difference?

The way I tell the difference is by the type of symptoms I’m experiencing.

If the symptoms are old symptoms, then I’m probably looking at a pseudo-relapse or exacerbation.

Instead, if the symptom is new, then I might be experiencing a relapse.

However, the only way to know for sure if I am experiencing a relapse is with an MRI scan, which is expensive and time-consuming. So a little bit of preliminary investigation is required before an MRI appointment is made.

How soon should I tell my doctor?

Whether I think it’s a relapse or a pseudo-relapse, I still need to see my doctor.

I usually wait a couple of days to a week unless the symptom requires urgent medical attention. If it’s a new symptom, for example, I tend to go in sooner, typically after a couple of days.  If it’s an old or recurring symptom, then I try to see if resting or managing triggers helps to alleviate the problem.

Who do I see first?

Neurologists in my area are in short supply and in high demand. Getting an appointment is hard, and they can get pretty annoyed with too many false alarms.

Instead, I seek help from my primary physician, in my case my GP. A GP can narrow down causes for my symptoms and decide the best course of action.

If it’s a flare up of old symptoms which are caused by other factors such as an infection. My GP can then treat the cause which improves the flare-up.

If she also suspects a relapse, she will do some preliminary tests to confirm if there is a need to see my neurologist. She will then pass on her findings directly to my treating specialist, and the appropriate appointments are made. I have found that going through my GP actually gets the ball rolling more efficiently than if I tried to wrangle a neuro appointment myself.

Make an action plan

Finally, it’s a good idea to make an action plan ahead of time. If you know what you need to do ahead of time, it will significantly reduce stress which is another trigger for flare-ups and is the last thing you need mid-relapse.

Identifying what is and isn’t a relapse is one of the things I felt very under-informed about when I was diagnosed. It really took me a while to get my head around this stuff.

Over time, I began to know my MS better, and I’m a lot less alarmist when it comes to dealing with my symptoms. Now I have a clear plan of action I follow when I think I may be having a relapse which has allowed me to manage my MS better ever since.

This blog is not written by a medical professional.

For medically related questions always speak to a doctor or nurse practitioner. 

Information and support on your MS journey can be found at MS Connect (Australia) or via MS International Federation

Helpful Links

If you feel unprepared or confused about what you should do if you suspect you have a relapse you can find further information about identifying and managing relapses through the following links:

Medical definition of an MS relapse

Pseudo-relapses

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