OBJECTIVES: Myasthenia gravis (MG) is a chronic neuromuscular disorder causing fluctuating muscle weakness and fatigue. While primary symptoms are well-documented, less attention is given to urinary-sphincter and sexual difficulties. In collaboration with French Patient Advocacy Groups (PAG) and a neurologist with sexology expertise, this study aimed to assess the patients' experience with myasthenia, with particular focus on overlooked symptoms.

METHODS: This is a national survey conducted among 190 adults with MG in collaboration with expert patients from 2 PAGs AMIS and myasthenia interest group AFM-Telethon and a neurologist with sexology expertise. The questionnaire was built based on feedbacks from on a focus group (n=8), then posted online on a secure platform and disseminated via PAGs and medical consultations.

RESULTS: The survey showed that among 88 respondents, 23% constantly experienced urinary sphincter difficulties, while 45% faced these difficulties intermittently, which reflects the fluctuating nature of MG symptoms. Additionally, 46% of 46 respondents reported consistently experiencing sexual difficulties and 39% intermittently. On a scale from 0 to 10 (0 = no impact, 10 = maximum impact), 46% of 46 patients rated the impact of sexual difficulties on their daily lives between 8 and 10, whereas 33% reported same for urinary sphincter difficulties. The average impact scores were 6.8 for sexual difficulties and 6.2 for urinary sphincter difficulties. Sexual difficulties were reported as the most impactful difficulties, followed by muscle weakness, double vision, breathlessness, and urinary and sphincter disorders among 17 different symptoms.

CONCLUSIONS: Despite the high impact of urinary-sphincter and sexual difficulties on daily life among myasthenia patients, these difficulties tend to be underestimated. Collaborating with PAGs played a crucial role in raising awareness about these difficulties in France. Implementing systematic screening protocols and facilitating referral to urologist and sexologist could greatly improve patient care and support.