Analysis of non-motor symptoms in amyotrophic lateral sclerosis.

Objective: We investigated non-motor symptoms in ALS using sequential questionnaires; here we report the findings of the second questionnaire.

Methods: A social media platform (Twitter, now known as X) was used to publicize the questionnaires. Data were downloaded from SurveyMonkey and analyzed by descriptive statistics, comparison of means, and regression models.

Results: There were 182 people with ALS and 57 controls. The most important non-motor symptoms were cold limbs (60.4% cases, 14% controls, p = 9.67 x 10^-10) and appetite loss (29.7% cases, 5.3% controls, p = 1.6 x 10^-4). The weaker limb was most likely to feel cold (p = 9.67 x 10^-10), and symptoms were more apparent in the evening and night. Appetite loss was reported as due to feeling full and the time taken to eat. People with ALS experienced medium-intensity pain, more usually shock-like pain than burning or cold-like pain, although the most prevalent type of pain was non-differentiated.

Conclusions: Non-motor symptoms are an important feature of ALS. Further investigation is needed to understand their physiological basis and whether they represent phenotypic differences useful for subtyping ALS.