MS Exacerbation | Emergency MS Relapse Response Plan

Know Your MS Relapse Symptoms

One of the scariest aspects of living with relapsing-remitting MS is worrying about when a relapse will happen.  For many living with MS, it’s not a matter of “if” a relapse will occur, but “when.” The unknowns – when, how long, how severe – can be a source of stress and worry. In this article, we will provide a practical tool to help you plan and be prepared if or when you experience an MS relapse.

However, years of research have resulted in many real-world strategies to minimize the frequency, intensity, duration, and potential impact of MS relapses.  A few of these strategies include: taking DMTs regularly as prescribed, eating healthy, exercising, getting good sleep, and having a strong MS care team.

Additionally, knowing the signs of a relapse and catching it early can ensure effective intervention and reduce the potential for more significant long-term problems. For example, paying attention to any changes in your body, such as issues with balance, fatigue, or vision changes, can indicate that a relapse is underway. If you notice a new or worsening MS symptom, a few key factors can help you determine if this is a true relapse or a pseudo-relapse (symptoms triggered by external factors like heat or infection):

1. The new or worsening symptoms last at least 24 hours.
2. The new or worsening symptoms must be unique or distinct from a previous relapse by at least 30 days.
3. Finally, the exacerbation must occur in the absence of any external triggers like infection.

Find A Relapse Plan That Works For You

Knowing what to do during a true relapse is vital.  Most of the time, this means getting in contact with a medical professional to guide your care, which can often mean a significant disruption in your life for an undetermined amount of time.  There can be some scrambling to ensure that everything is taken care of when a relapse does occur.

Creating a plan for a possible relapse, a plan that fits your life, is like having insurance.  A relapse plan is not a one-size-fits-all model. With a little planning, you can create a relapse response plan tailored to your needs.  The most important aspect of this is to create your plan when you are feeling well, thinking clearly, have time to set aside, and when you can include care partners.  Most people would agree that it’s not smart to try to create a fire escape plan in the middle of a fire. In an emergency, we don’t often think clearly, it’s hard to think beyond the immediate moment of just trying to survive.  So, don’t try to create your relapse emergency plan in the middle of a relapse.

Create an MS Relapse Plan

There are many ways to approach building a relapse emergency plan. The worksheet below is one method that might be helpful.  The details you include can vary, but it’s important to make the plan user-friendly, printed out, and easily accessible.  Creating the document on a computer allows you to make changes and updates as you need.

Your plan should include the names and contact information of people who can help with specific needs.  It may be the same person for many categories, so you might not need to specify each task. For example, if you live with a partner, spouse, parent, or adult child, they may assume responsibility for many of the areas of need (e.g., cooking, cleaning, household chores).  Even in this type of living situation, it might still be helpful to outline any specific areas you want to ensure are taken care of (e.g. a certain way you feed your pets or water your house plants).

Put Your Plan Together When Feeling Well

Typing out specific instructions in your plan can give you peace of mind when you are not feeling well due to a relapse.

It can also be helpful to have a “go bag,” similar to what people prepare when expecting to rush to the hospital for childbirth or when readying to evacuate a home due to fire or flood.  Your relapse “go bag” may not need to be quite so comprehensive but should include essentials like an extra phone charger, a change of clothes, a small supply of medications, and a printed copy of your emergency plan.  If you need to go to the hospital for a relapse, having this bag ready can make the process much smoother.

MS Emergency Relapse Response Plan