Although each individual’s journey with MS can be incredibly varied, there is one common factor experienced by nearly all individuals with MS at some point throughout their journey with the condition: relapse. Relapses are all too common for individuals across varying types of MS, despite common misconceptions. Contrary to the names of the various types of MS, relapses can happen during relapsing-remitting MS (RRMS), secondary progressive MS (SPMS), and primary progressive MS (PPMS)—not only during RRMS. While RRMS is characterized by clearly defined relapses with worsening symptoms followed by periods of remission, SPMS can be primarily progressive in nature, while still having periods of relapse or changes in MRI activity. Further, PPMS can also be classified as being active with evidence of new MRI activity or occasional relapse.1
The 2018 Multiple Sclerosis in America survey aimed to gain a better understanding of relapse across various types of MS, as well as to learn more about what life with MS is like. The survey contained over 100 questions surrounding MS diagnosis, treatment, quality of life, symptoms, relapse, and more, and was completed by nearly 5,500 respondents. These respondents included over 5,300 individuals with MS, as well as over 160 caregivers to individuals with MS.
Individuals across all types of MS reported struggling with relapse, with slightly different experiences. For example, those with RRMS reported sometimes being able to recognize and control their relapses with their current treatment plan, including with disease-modifying therapies (DMTs). For others with PPMS, relapses may have been less obvious, and may have been discovered during an MRI. Despite these variations, when asked to describe relapses in their own words, participants often cited similar experiences, including an increase in the intensity or frequency of symptoms, the presence of a new symptom, experiencing a flu-like feeling or fatigue, and finding it difficult to complete normal tasks and functions.
How many individuals are experiencing relapse and how often?
Roughly two-thirds of all patient respondents (across all types of MS) reported having at least one relapse in the past year, with nearly 20% having four or more relapses. Of those who reported having at least one relapse over the past year, 73% said their relapse lasted for one month or less, while 13% said their relapse lasted one to three months. The remaining proportion of individuals reported that they had at least one relapse over the past year that lasted three months or more.
What symptoms are experienced during a relapse?
Although each individual’s relapse-related experiences can be unique, there were several symptoms reported by many respondents. The most common symptom related to relapse was fatigue, which was experienced by nearly 80% of individuals. Other symptoms reported by 50-75% of respondents included:
- Walking, balance, or coordination problems
- Numbness, tingling or altered sensation
- Muscle weakness
- Muscle spasms or spasticity
- Cognitive dysfunction (including memory loss)
The next most common symptoms reported during relapse were experienced by 30-49% of individuals across all types of MS and included the following:
- Depression or mood changes
- Heat sensitivity or heat intolerance
- Bladder problems
- Headaches or migraines
- Vision problems
- Speech difficulties
- Bowel Problems
- Foot drop
Other less commonly reported symptoms (less than 30%) included itching, tremors, cold sensitivity or intolerance, sensitivity to sound, eye pain, trouble swallowing, sexual dysfunction, hearing issues, and paralysis.
Impact of relapse on physical and emotional wellbeing
Survey participants reported that as relapses increase in frequency, quality of life decreases. Additionally, disability scores worsen and frustration with MS increases when more relapses occur. Relapse rate can vary based on the type of MS and other aspects of an individual’s health, however, those with one to two relapses in the past year often had RRMS and were the youngest respondents. Older survey participants and those with PPMS were the most likely to report having three or more relapses in the past year. An increased frequency in symptoms, as well as increased levels of pain were reported in this group as well. Additionally, some responses indicated that the more relapses within a year, the less likely an individual was to see an MS specialist or seek out latest medication info. This group also reported feeling frustrated with having tried various treatment options and still feeling as though their MS was not under control, whereas those who experienced no relapses within the past year were more confident in what they were doing to manage their MS.
As evidenced from the 2018 Multiple Sclerosis in America survey, many individuals with MS across all types of the condition experience relapse, and each individual’s experience is unique. Relapse can take on different forms based on the kind of MS an individual has, as well as any other conditions they may be battling alongside their MS, however, RRMS, SPMS, and PPMS are all vulnerable to the potential for relapse. 2View References
1. Types of MS. National Multiple Sclerosis Society. https://www.nationalmssociety.org/What-is-MS/Types-of-MS. Accessed October 21, 2018.
2. Health Union, LLC. Multiple Sclerosis In America 2018, syndicated survey. Available from: https://health-union.com/contact/