Life with MS

A common question asked by people living with MS, whether newly diagnosed or veterans to MS, is: “How do I know if I am having a relapse?” Occasionally, a person will tell me that they have had three relapses in a week, or 15 relapses in a month. More frequently, people will call the office asking for steroids because they “just don’t feel well.”  These comments are clues to me that relapses remain mysterious and deserve some educational time. 
 
A relapse, also called a flare-up or exacerbation, involves a new neurological symptom that lasts longer than 24-48 hours and is not caused by anything else. Sometimes, it can also involve the return or increased severity of an old neurological symptom. 
 
On the other hand, a pseudorelapse (pseudoexacerbation) is the increased severity of an old neurological symptom triggered by infection, heat exposure, fatigue, stress, medication changes, alcohol overuse, or dehydration, to name a few. 
 
It is important to distinguish between the two for a couple of reasons.
 

1. Relapses indicate your MS is active, and suggest your disease-modifying therapy may not be effective
2. Relapses and pseudorelapses are treated differently 

 
If you have relapsing MS, the root of relapse therapy is taking your DMT as prescribed. Then, depending on severity, relapses are treated with steroid therapy or ACTH gel, as well as rehabilitation therapy. However, whether or not you treat a relapse has no long-term effect on your MS progression. 
 
Pseudorelapses are treated by correcting the underlying problem. This could mean rest and hydration if you have been overdoing it, or an antibiotic if you have an infection, such as a urinary tract infection. Steroids will not fix symptoms of a pseudorelapse. While they may give you a false sense of improvement for a few days, they are an inappropriate treatment. Steroid use should be judicious because of the possible effects on your long-term health.
 
So far we have learned that if you have new symptoms lasting more than a day or two, you may be having a relapse. But when existing symptoms worsen, how do you know whether you are having a relapse? I recommend keeping a journal and defining what constitutes a good day and a bad day for you. This way, when something out of the ordinary occurs, you can compare it to what you know to be normal for you. 
 
For example, you may know that even on a good day, your feet tingle after you exercise. Then, after a long day, you find your feet are tingling more than usual and you are fatigued. Considering this is an existing symptom, worsened after an unusually long day, it’s safe to assume it’s not a relapse. However, if this bad day lasts longer than 24 to 48 hours, it’s time to call your healthcare provider.
 
However, if you have slowly progressive vision loss during the course of a day, and you have never lost your vision before, this is out of the ordinary.  In this case, you would want to call your healthcare provider ASAP.
 
If you are ever unsure whether you are having a relapse, it is always best to call and discuss them with your healthcare provider. Whether it’s a relapse, a pseudorelapse, or something else, they can guide you in how to best manage what you are experiencing.