Analysis of non-motor symptoms in amyotrophic lateral sclerosis

Abstract

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.

Keywords:

• Amyotrophic lateral sclerosis
• non-motor symptoms
• questionnaire
• pain
• cold limbs

Acknowledgments

AAC is an NIHR Senior Investigator (NIHR202421). This work is in part an EU Joint Programme - Neurodegenerative Disease Research (JPND) project. The project is supported through the Motor Neurone Disease Association, My Name’5 Doddie Foundation, and Alan Davidson Foundation. This study represents an independent research part funded by the National Institute for Health Research (NIHR) Biomedical Research Center at South London and Maudsley NHS Foundation Trust and King’s College London.

Disclosure statement

AS, SR, and AAK do not have competing interests to disclose. AAC reports consultancies or advisory boards for Amylyx, Apellis, Biogen, Brainstorm, Cytokinetics, GenieUs, GSK, Lilly, Mitsubishi Tanabe Pharma, Novartis, OrionPharma, Quralis, Sano, Sanofi, and Wave Pharmaceuticals.

Data availability statement

Not applicable.

Additional information

Funding

AAK is funded by ALS Association Milton Safenowitz Research Fellowship (grant number 22-PDF- 609.DOI: 10.52546/pc.gr.150909.), The Motor Neurone Disease Association (MNDA) Fellowship (Al Khleifat/Oct21/975-799), The Darby Rimmer Foundation, and The NIHR Maudsley Biomedical Research Center. This project was funded by the MND Association and the Wellcome Trust. This is an EU Joint Programme-Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organizations under the egis of JPND - www.jpnd.eu (United Kingdom, Medical Research Council (MR/L501529/1 and MR/R024804/1) and Economic and Social Research Council (ES/L008238/1)). AAC is an NIHR Senior Investigator. AAC receive salary support from the National Institute for Health Research (NIHR) Dementia Biomedical Research Unit at South London and Maudsley NHS Foundation Trust and King’s College London. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.