- Do you think that you may be having a relapse?
- What are the common symptoms of an MS relapse?
- When should you call your neurologist or other healthcare provider?
- What other factors can increase your risk of having an MS relapse?
- What is a psuedoexacerbation?
- What are the causes of a psuedoexacerbation?
- What should you tell your doctor when you call?
- Should you bring someone with you when visiting your physician?
- How can relationship roles change during a relapse?
- How can I plan in advance?
Relapses are flare-ups in symptoms, causing a person with MS to experience a worsening of existing symptoms and/or the appearance of new symptoms. These are caused by an increase in disease activity in the brain or spinal cord, where inflammation is affecting the axons (nerves of the central nervous system) and the protective layer of myelin surrounding the axons.
Relapses occur without warning and must be present for at least 24 hours to be considered a true relapse. A relapse may continue anywhere from a few days to a few months. Some individuals will not experience a relapse for a full year or more, while others may have one or two within a year. Individuals with very active MS can have more than two relapses within one year. Please note, however, that a relapse is usually separated by at least one month from the previous relapse.
MS is known for causing a wide variety of symptoms, many of which are listed on MSAA’s website at mymsaa.org, under “About MS” and “Symptoms.” Shown below are some of the more common symptoms that may arise (or worsen) during a relapse.
- Loss of vision (needs to be addressed as soon as possible)
- Muscle functioning/spasms
- Walking or balance difficulty
- Extreme fatigue/weakness
- Difficulty speaking
If you are experience a flare-up of symptoms (as described above) for more than 24 hours, you may be having a relapse and contacting your doctor at that time is advised. However, if 24 hours haven’t passed but your symptoms are severe and could affect your health or safety, you should contact your doctor immediately.
- Are you taking your medication exactly as your doctor has prescribed? The disease-modifying therapies (DMTs) approved by the Food and Drug Administration (FDA) have been shown to reduce the frequency and severity of MS relapses, but only if taken exactly as prescribed and without any breaks in treatment.
- Have you delivered a baby in the last few months? After childbirth, women are particularly susceptible to relapses.
- Are you in the process of recovering from an infection, or have you recently recovered from an infection? A recent infection may heighten an individual’s risk of a relapse.
A psuedoexacerbation is a flare-up of symptoms, similar to a relapse, but it is not caused by an increase in disease activity. Instead, it is usually caused by various types of physical stress that impact your overall health. Once the stress is resolved, this type of symptom flare-up will usually subside within 24 hours.
- A urinary tract infection (UTI) is a common cause of a psuedoexacerbation. Many people are not aware of the debilitating effects that a UTI can have on someone with MS. Simple testing can confirm a UTI and prevent unnecessary treatment of what may otherwise appear as a relapse.
- Have you recently spent time outside in very warm temperatures? Have you been running errands and fluctuating back and forth between your air-conditioned home or car, and then to a very warm environment outdoors? Individuals with MS are usually more sensitive to changes in temperature and warmer temperatures. When returning to a cooler environment, the symptoms typically subside. Care must be taken, however, not to cool someone down too quickly – as this will cause shivering and increase physical stress. MSAA’s Cooling Program offers cooling equipment to individuals who qualify, enabling them to work or play more comfortably and without an increase in symptoms, whether outside during the heat of the summer months, or in any other warm environment.
- Another issue that can occur is the amount of energy an individual with MS may expend. Naturally, when you are having a particularly good day and feel energized, you may be tempted to overexert yourself. In addition, if you exercise (which you should as your provider recommends), you may overdo the amount of exercise causing your symptoms of fatigue to heighten. This too may cause a psuedoexacerbation. Once you are able to cool down, the symptoms should subside.
- Have you recently begun taking any new medications, which could be causing new or worsened symptoms as side effects, or possibly interfering with other treatments?
Finding a comfortable way to track your symptoms is important, so you can provide accurate details about your MS to your doctor. Smartphone applications such as MSAA’s My MS Manager can be very helpful. Relying on a notebook or journal for keeping notes works well too.
When speaking with your doctor, you need to be as specific as possible while describing the symptoms that you have been experiencing. To follow are some basic questions that your doctor will want to ask:
- When did symptoms begin, how did they make you feel, and how are they limiting or changing your daily activities and overall functioning?
- Have there been any changes to your treatment plan?
- Has a new medication been added for a condition not related to MS?
- Have you recently given birth?
- Have you experienced any significant changes in your life or stressful situations since you last met with your physician?
- Has another healthcare provider, other than your neurologist, been involved in your care and treatment recently?
- How would you describe your fatigue level, and how would you describe your mood?
You may wish to refer to your journal notes or to your records from your My MS Manager smartphone app to make sure you haven’t overlooked anything. An important note is to not dismiss new symptoms simply because you feel that you may have been under significant stress of late. The best plan is to form a partnership with your healthcare professional to make the right decision for you in terms of managing your MS and any potential MS relapses. Appropriate and timely relapse management, which is often accompanied by rehabilitative strategies, can greatly improve patient outcomes.
If at all possible, take someone with you when you visit your physician. Relapses can cause significant anxiety, which can interfere with your ability to focus and remember everything you want to say – as well remember anything the doctor may explain to you. Having someone accompany you to an appointment, such as a close family member, friend, or care partner, can be of great help. He or she can be reassuring, and serve as both a good listener and valuable note-taker during the visit to your doctor.
During a relapse, your role may temporarily change within your different relationships (such as parent, spouse, or employee). These types of changes may be hard to accept. For instance, you may not be able to care for young children who require constant attention; errands and household duties may become too tiring or difficult; or perhaps your job requires physical work that is not possible during a relapse. These types of limitations will present challenges as other individuals may need to fill these roles until your symptoms subside.
Having conversations beforehand can go a long way in helping individuals and families resolve these challenging and complex issues. MSAA’s Helpline is here to help you plan ahead. To contact MSAA’s Client Services Specialists, please email MSquestions@mymsaa.org or call 800-532-7667.
Relapses occur without warning, and depending on your individual symptoms, can greatly impact your ability to perform everyday tasks. Developing a plan for coping with these types of changes can be very helpful. Individuals need to consult with their care partner and family members to ensure they are prepared. Counselors and even MSAA Helpline staff can also provide assistance in adequately planning for these unpredictable events.
New mothers: Asking for help is a difficult task, but doing so in advance and having a plan in place will help to make things go more smoothly. New moms with MS may be particularly at risk for a relapse. New mothers need to make a plan as to whom they can call if they begin to experience symptoms without warning while caring for an infant.
Employment: If you are employed and have not yet disclosed the diagnosis, you may want to review your employee benefits in terms of allowances for leave or sick time, before deciding whether or not to tell your employer. Knowing the company’s policies on all of these issues is helpful, and discussing the policies with your human resource manager (without disclosing your MS until you choose to do so) may be helpful too, if appropriate. Employees who are new to a position sometimes have a more difficult time than others who have been employed in the same position for a longer period of time.
Work Accommodations: If you choose to disclose your diagnosis, remember that companies are interested in how your duties will be accomplished. Designing a plan as to how the duties of the position can be accomplished with accommodation(s) can help. MSAA’s Helpline consultants can offer suggestions and referrals for legal advice. They can also direct you to the Office of Vocational Rehabilitation (OVR) in your state, along with the Job Accommodation Network (JAN), at askjan.org. Both of these resources can help you to effectively evaluate these issues.