Some of the most frequently asked questions by patients who have a new diagnosis of MS have to do with “the exacerbation.”
- What symptoms should I look for?
- How do I know I am having an exacerbation?
- What should I do if I think I am having an exacerbation?
- Should I be treated for this exacerbation?
We have assembled the following guidelines to help you recognize when you might be having an exacerbation and a framework for how we approach patients who need medical attention during an exacerbation. As you read through these guidelines, please note these important things to keep in mind: When in doubt, you can always call us when you say the word, we will do our best to see you for an exacerbation within 48 hours.
A note regarding terminology: We use the term “exacerbation,” “event,” “attack,” “relapse,” and “flare” interchangeably. Regardless of the exact verbiage, we are talking about a symptom or set of symptoms that are distinctly more intense than baseline, usually getting worse over a period of days, lasting more than 48 hours and not associated with any infection or fever.
What symptoms should I look for?
MS exacerbations are not always predictable and not always stereotypic, or the same every time. However, MS exacerbations are typically obvious. Whether it is a new symptom or recurrence of an old “attack” you should get a sense that the symptoms are above and beyond any “expected” fluctuation within a day. If you think you might be having an exacerbation, follow these steps:
STEP 1: GREEN ZONE
Ask yourself the following questions:
- Do I have a cold/flu/infection (bladder, urine or other)?
- Am I sleep deprived or under unusual stress (physical or emotional)?
- Are my symptoms coming and going throughout the day?
- Are my symptoms similar to those I have felt previously from MS?
- Did my symptoms start just within the last 24 hours?
If the answers to any of the above questions are “YES” it is possible you are NOT having an exacerbation. Make note of your symptoms, get some rest and take care of yourself. If you think you have an infection, it needs to be addressed, so please contact your primary care physician. We would consider this to be in the “GREEN ZONE” for MS exacerbations and more likely what is called a Pseudo-Relapse, which is a transient worsening of prior MS symptoms due to physical or psychological stressors. If you are concerned, please give us a call or send us a message and we will certainly take note of your status.
STEP 2: YELLOW ZONE
If it’s been 48 hours and your symptoms seem to be persisting or worsening and there is no sign of infection, you may be experiencing an MS exacerbation and we would consider this to be in the “YELLOW ZONE,” a caution area, for MS exacerbations. At this point, you should alert us of your status by phone or secure message. A medical assistant or nurse will respond to your communication so we can offer you a tentative appointment sometime in the next few days, if you would like. Sometimes people with MS can stay in the “YELLOW ZONE” for a few days and find that their symptoms begin to improve without any intervention.
STEP 3: RED ZONE
It’s been more than 48 hours, but less than two weeks since your symptoms have peaked. You are fairly certain you are having an exacerbation or are concerned enough that you want to be evaluated. We would consider this to be in the “RED ZONE” for MS exacerbations. When you are in the “RED ZONE” we offer you two choices: we can see you to help determine what is going on (we should have already made a tentative appointment with you), or if it is fairly obvious to you and to us over the phone or through messaging that you are having a true MS exacerbation, one of our nurses can arrange to have you treated with IV steroids. Although we do not necessarily require you to be seen when you are in the “RED ZONE” we generally like to keep track of how often you are in the “RED ZONE,” as this helps us to better manage your disease over time.
Important things to remember about an MS exacerbation
- Not every exacerbation has to be treated
- We have time to intervene, as steroids are thought to be most effective when given up to 14 days after symptoms start
- Steroids can shorten the duration of symptoms, but generally do not impact how much you recover to your previous baseline.
- In a typical exacerbation the majority of recovery will take place six weeks after your symptoms peak. This is with or without steroids.
- Maximum recovery will likely take three to six months with slow, continued improvement of symptoms.
- There may be residual long-term symptoms from each relapse, and it is important to prevent such relapses in the future because of this.
Printable Version of the MS Relapse Action Plan.
If you would like to discuss your progress with the Virginia Mason MS team, call (206) 341-0420.