Swallowing difficulties in MS

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Swallowing difficulty or dysphagia occurs in a third of MS cases.

Aside from the discomfort, it is dangerous for small bits of food to go down the wrong way into the lungs rather than in to the gullet. The latter can lead to chest infections (termed aspiration pneumonia), and is the leading cause of death in neurodegenerative conditions including MS.

Early review of swallowing by Speech and Language Therapists improves morbidity and mortality when this occurs.

When a group of MS patients with swallowing difficulties were surveyed for swallowing difficulties in Turkey, they found that age correlated with dysphagia (i.e. older you were the more likely it was to occur), and those with a progressive disease course were more likely to have a problem.

In the progressive phenotype, secondary progressive MS was more likely to have more serious problems with swallowing than primary progressive MS (see Figure below). Why? Secondary progressive MS has a more prolonged disease course and tend to be older.

Figure: DYMUS (dysphagia in multiple sclerosis) and SWALQoL (swallowing quality of life) scores in MS types. Boxes indicate the first and third quartiles, and median observations are denoted by a line in each box. Mean values are demonstrated by an “+” in the boxes. Whisker caps indicate the minimum and maximum values. *Kruskal Wallis variance analysis and Dunn Test, † One way ANOVA and Tukey test.
Abbreviations: PP, Primary Progressive MS; RR, Relapsing Remitting MS; SP, Secondary Progressive MS.

Interestingly, this study also found that sleep and fatigue also deteriorated in accordance with more symptoms, hence the psychological burden of swallowing difficulties mustn’t be overlooked.

Abstract

Mult Scler Relat Disord 2020 Jul 14;45:102397. doi: 10.1016/j.msard.2020.102397. Online ahead of print.

Screening of dysphagia by DYMUS (Dysphagia in multiple sclerosis) and SWALQoL (Swallowing quality of life) surveys in patients with multiple sclerosis

Emel TahirEsra KavazÖzgür KemalSedat ŞenMurat Terzi 

Background: Dysphagia is a life-threating symptom in patients with multiple sclerosis (MS) because aspiration pneumonia develops as a consequence of swallowing disorders. Dysphagia can be detected by using patient-reported outcome measures in order to prevent complications.

Objective: To identify the dysphagia prevalence, severity, and swallowing related quality of life (QoL), by using two validated dysphagia questionnaires.

Method: Dysphagia in Multiple Sclerosis (DYMUS) and Swallowing Quality of Life (SWALQoL) questionnaires were collected from 64 patients with MS.

Results: The mean total SWALQoL score was 67.9 (±11.2) and the mean DYMUS score was 2.02 (±1.3). The highest mean SWALQoL subdomain score belonged to communication (76.7 ± 15.8), and the lowest score belonged to sleep (54.2 ± 12.2). There was a significant correlation between age and DYMUS and SWALQoL scores (r: 0.539 and r: -0.610 respectively, P < .001). Additionally, there was a significant moderate correlation between disease duration and DYMUS and SWALQoL scores (r: 0.693 and r: -0.697 respectively, P < .001). DYMUS and SWALQoL scores did not vary between males and females (P > .05). Patients with secondary progressive MS had higher DYMUS and lower SWALQoL scores (more dysphagia) than in primary progressive or relapsing-type MS. There was a strong, negative and statistically significant correlation between DYMUS and total SWALQoL scores (Spearman’s rho: -0.862, p < .001).

Conclusion: MS causes dysphagia and reduces QoL. Age, disease duration, and MS type are major factors that influence SWALQoL. DYMUS and SWALQoL are well correlated. DYMUS is an easy to answer tool that may advised for screening dysphagia in patients with MS.

About the author

Neuro Doc Gnanapavan

8 comments

  • The prospect of getting this is terrifying. Is there anything specifically that can be done to reduce one’s chances of acquiring it? For example, have any of the healthy living interventions been shown to reduce susceptibility?

    • I have Dysphagia and had its been at a lower level for sometime. Meaning I avoid certain foods NEVER eat or drink unless seated. Mindful eating. I’ve also been given a diet by Speech & Language Level 5 and some 6. 1 is the most restricted. Like most MS symptoms they can be managed and hopefully a slow progression. It’s frightening to get a bout of choking but definitely reduced with diet. I’ve had pneumonia twice but fortunately one lung and it went with antibiotics. Try not to be terrified. One day and one symptom at a time. Education, healthy weight and exercise to your ability will all help.

        • If you start to find certain foods tripping you up, for me, bread, nuts lettuce anything dry, ask to see S&L. They can do swallowing assessments and good advice. 😊

  • I am often woken at night by repeated ‘incomplete’ swallowing. Daytime issues are with foods like diced carrot and rice.

    • There are a lot of factors that can influence swallowing from local such as the swallow mechanism and accessory factors, such as reflux/gastritis. Swallow can be assessed from simply tests with someone observe you swallowing a cup of water to contrast based x-ray studies of swallowing and gastroscopy itself. Bottom line is get investigated,

  • One of the best pieces of advice I received after my initial MS diagnoses was to see a speech and language specialist. They performed various tests to provide a base line for future reference. Three years later, I have started to develop swallowing and speech difficulties, so having the baseline measurements have been very helpful in assessing my progression.

  • A study was published about this two years ago in multiple sclerosis news ?
    I quote:

    “Serious complications such as dehydration, malnutrition and aspiration may occur as a consequence of dysphagia, potentially leading to breathing difficulties, fatigue and pneumonia, respectively. Dysphagia also may affect patients’ quality of life, their pleasure in engaging in social events, and their relationships with family and friends.
    Despite its relevance, no studies have addressed suggestive symptoms of dysphagia in MS patients, as well as its affect on quality of life.

    Nearly 50% of MS patients with dysphagia complained of mental health implications, such as feeling frustrated, discouraged, depressed and annoyed. Fear of choking and worry about getting pneumonia were reported by almost half of participants with swallowing problems. This led to reduced interest and enjoyment in eating and drinking in almost 45% of patients with dysphagia.

    The link between dysphagia and EDSS implies that swallowing difficulties increase with advanced stages of disability, the team noted. “Therefore, it is necessary to assess the presence of patient reported dysphagia in the earliest stages of the disease,” they wrote. “This would allow healthcare professionals to implement preventive interventions and reduce the risk of physical and social complications.”

    I remember reading about it two years ago and terrifying myself.

    Now, here I am – (thirsty, but mindful of my sieve bladder) not able to get downstairs and make any food, (not that it holds any appeal anymore, I am so over choking on a daily basis! )

    ….And not being able to articulate myself properly, and waking up knackered…

    All constantly talking about these things breeds fear in our souls, and does not seem to precipitate anything more than a higher uptake of drugs

    We need a cure people ! Ain’t no med or thickener or speech therapists advice can alleviate this bs

    I am hoping my daughter becomes a neurologist, this is just ridiculous

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