A noticeable but unknown proportion of people with multiple sclerosis (pwMS) report the sudden experience of wetness on a dry skin site, i.e., phantom wetness. Yet, we lack patient-centred investigations on the prevalence and subjective experience of this uncomfortable symptom.
To assess the prevalence of phantom wetness in pwMS, its association with individual factors, and subjective experience.
757 pwMS completed an online survey assessing the frequency and subjective experience of phantom wetness. We calculated descriptive statistics and odd ratios and performed a thematic analysis to extract a patient-centred description of phantom wetness.
220 participants reported experiencing phantom wetness (29%). Females and those affected by Relapsing Remitting (RR) MS were 2.17 [1.39, 3.34] (p<0.001) and 1.73 [1.23, 2.40] (p = 0.001) times as likely to experience phantom wetness as males and those not affected by RR MS, respectively. The thematic analysis indicated phantom wetness is more often experienced as water trickling on the skin of the lower limb.
Phantom wetness is a paraesthesia occurring in almost a third of the sample surveyed. Clinicians are encouraged to discuss with pwMS to validate their experience as a genuine symptom. Using the patient-generated language we report may help facilitate such conversations.