Is It An Exacerbation? Listen To Your Gut

A large majority of those suffering from Multiple Sclerosis live in fear of their next exacerbation: the next time their symptoms will worsen and life as they know it will change. It’s important to be able to identify when one of these “relapses” is happening. Once an exacerbation is identified, getting a steroid treatment can dramatically help shorten this rough period of time and hopefully minimize the damage it causes. With the importance of identifying it quickly in mind, many look for ways to determine whether it’s really a “relapse” or just a pseudoexacerbation. Over my time with MS, I’ve learned that one of the best ways to do that is to listen to your gut.

What is an exacerbation?

Many people use and favor the term “relapse” because of the Relapsing-Remitting designation. I’ve never been a fan of that term though, mostly because it implies that everything will be go back to normal after the relapse. While things may appear normal for a bit, that’s deceptive. During an exacerbation, or relapse, if you prefer, new and irreversible damage is done. Your immune system has once again gotten excited and attacked your nervous system and eaten away at the myelin sheath surrounding your nerves. While you may function better after one of these episodes, the effects of an exacerbation can linger for the rest of your life.

Steroid treatment

As many know, we can attempt to shorten the length of an exacerbation and the damage that occurs during it by using steroids. I’ve had great (as in efficacy, not enjoyment) success in the past with a regimen of five days of IV steroids followed by an oral steroid taper (which can take up to a month). While that can be helpful with the exacerbation and its effects, it can be pretty rough on the body. Taking high dose steroids is not a pleasant thing for most people. For many, steroid side effects can be awful. Weight gain, rapid mood swings, trouble sleeping, stomach issues, and rapid heartbeat are just a few of the unpleasant side effects from steroids. So it’s no wonder that we really want to be correct in determining if it’s really an exacerbation or not.

Is it a pseudoexacerbation?

That decision is made tough by the fact that MS patients often experience pseudoexacerbations, which are the temporary worsening of symptoms caused by outside conditions. It doesn’t take too much to make our symptoms act up. Everything from a change in temperature, stress, a change in routine, to even loud noises can cause our existing issues to suddenly show up in force. So it can be extremely hard to determine if our issues are from our existing damage or new damage happening.

Relying on your own judgment

There is, unfortunately, no quick test to determine if you are experiencing an exacerbation. An MRI would likely show activity, however, scheduling one, getting it, and having the results read is not the quickest or most pleasant undertaking. This often leaves us or our doctors trying to determine what’s happening based on anecdotal evidence. I’ve had my neurologist ask me if I thought it was an exacerbation and rely on my input on whether I needed steroids or not. That can be a pretty common occurrence and seem strange to the newly diagnosed. With no easy and quick test, it’s often up to the patient to determine if they think they need a harsh course of steroids or not.

Trust your gut feeling

I often get asked by other folks with MS if I think they are having an exacerbation. Typically, I tell people to think about the symptoms they are having. Are they new? If you haven’t experienced them before, then it’s probably an exacerbation. I also ask what their life has been like, are they under stress? Were they outside in the heat? Have they just been more active than normal? Any of those things can make you feel crappy but may not be a full-on exacerbation. I also ask them what their gut tells them. Over my years with the disease, I feel like I can just tell when it’s a relapse. I can tell by the way my body feels. I have an inexplicable gut feeling that tells me it’s an exacerbation. Sometimes thinking about it too much can cause you to make the wrong decision. So I often trust in my body and that gut feeling to help me. I’m sure this is something that works for me because I’ve had the disease for so long, but I still think it’s something to consider. If something doesn’t feel right, if it feels different, then it probably is. Trust your body, trust your gut feeling. Most importantly though, reach out to your MS specialist and see what they think.

Thanks for reading!

Devin