Even though spasticity is prevalent, persons with multiple sclerosis (MS) with spasticity (PwMSS) might not identify the symptoms or have the words to describe them to their doctor, thereby delaying diagnosis and treatment. For a study, researchers sought to know how PwMSS perceived and explained their spasticity symptoms and how interactions with their doctors regarding these symptoms and spasticity started. In partnership with 3 MS support organizations in the United States, SEEN-MSS (Symptoms and Emotions Exploration Needed in Multiple Sclerosis Spasticity) was developed as a cross-sectional online survey. PwMSS, based in the United States, was surveyed from February to May 2021 and contained multiple-choice and rank-order items. Descriptive statistics were used in the analysis. A total of 1,177 adult PwMSS, 78% female, completed the survey, with an average age of 56.8 years. Participants had been diagnosed with MS for an average of 16.8 years and had been experiencing spasticity symptoms for 11.5 years. Between MS diagnosis and the beginning of spasticity, 65% of PwMSS felt underprepared or unprepared for the prospect of developing spasticity and were unaware that spasticity was a symptom of MS. Even though 91% of respondents said they had muscular spasms, only 69% used the term muscle spasms to describe their symptoms. Muscle tightness, stiffness, cramping, and discomfort were also typical complaints. Many PwMSS (60%) said their symptoms were perplexing and didn’t recognize it as spasticity. After experiencing symptoms, 78% initiated a dialogue with their doctor, 52% wished they had spoken with their doctor sooner, and 42% said they waited a year or longer to speak with their doctor. According to respondents, physicians used the term spasticity two-thirds of the time throughout these discussions. The survey results showed that PwMSS might be unaware that spasticity can be a sign of MS, and they might be unsure how to characterize symptoms or whether they should consult their doctor. The outcomes highlighted the importance of education in enabling early recognition, diagnosis, and treatment of spasticity in MS patients and the benefits of using a common language between doctors and patients.
