ClinicSpeak: swallowing problems in MS

If you have swallowing problems tell your neurologist or nurse. #ClinicSpeak #MSBlog #MSResearch

“More bad news for those of you who want their reading material to filtered and passed through rose-tinted glasses. The meta-analysis below (combination of studies) shows that more than a third of MSers have swallowing difficulties or dysphagia. I must admit this figure was much higher than I would have expected from clinical practice; but our recent survey done via the blog confirms this figure. Are we missing dysphagia in clinic or is the prevalence going down as we modify the course of MS with DMTs?”

“There are two ways to develop dysphagia. Firstly, as part of a clinical attack or relapse and secondly as part of progressive MS as the disease involves the coordination and muscles of swallowing. Swallowing problems occur when MS affects the brain stem. It is a very scary thing not being able to swallow properly and having choking episodes. The latter is a reason for so called aspiration and the development of pneumonia. Pneumonia is one of the commonest cause of death in end-stage MS.”

“MS-related dysphagia is typically managed by swallowing therapy, dietary changes and feeding tubes. Swallowing therapy is done by our speech and language therapists (SLT) who use a range of techniques, these include swallowing exercises. Dietary changes are important for example advice about softer foods and thickened fluids that you may find easier to swallow. As a last resort we may have to insert a feeding tube; these are often needed to provide adequate nutrition while you’re recovering your ability to swallow from a relapse or when your MS has progressed. A feeding tube also reduces your risk of getting an aspiration pneumonia. Another advantage of a feeding tube is it makes it easier to administer medication. There are two types of feeding tubes; a nasogastric tube – a tube that is passed down your nose and into your stomach and a a percutaneous endoscopic gastrostomy (PEG) tube – a tube that is implanted directly into your stomach. Nasogastric tubes are designed for short-term use and need to be replaced and swapped to the other nostril after about a month. PEG tubes are designed for long-term use and last several months before they need to be replaced.”

“Good news; with our treatment target of NEDA we hopefully will prevent ongoing damage to the brain stem or at least delay it by many years. I therefore predict as we improve our management of MS the incidence of dysphagia will drop. Already we know that by simply starting interferon-beta 3 years earlier increases your chance of being alive at 21 years by almost 50%; this figure will be much better with more effective DMTs. The cause of death in the latter study was due to MS in  the majority of cases hence we can extrapolate this to a lower incidence of pneumonia and its main cause dysphagia.”

“If you have dysphagia you need to make sure your neurologist and nurse know about it so you can be referred for treatment. Your family and carers also need to be trained to do pharyngeal sweep and the Heimlich manoeuvre to dislodge food in your throat if you choke. Simple things, common sense things, can often prevent a catastrophe.”

Epub: Guan et al. Prevalence of dysphagia in multiple sclerosis: a systematic review and meta-analysis. Neurol Sci. 2015 Feb.

Background: Although dysphagia was recognized as a clinical finding in MS as early as 1877, it has not received enough attention yet. With the progress of diagnostic method for dysphagia, there has been a rapid development in estimating the prevalence of deglutition disorder in MS.

Aims: We aimed to conduct a systematic review and meta-analysis of published literature to establish the prevalence of dysphagia in multiple sclerosis. 

Methods: We systematically searched Embase, PubMed databases and Cochrane library from 1980 to August 2014, supplemented by hand searching to identify relevant studies. Of 198 retrieved articles, 15 eligible surveys with a total population of 4,510 met the criteria. 

Results: Twelve studies provided an estimate based on subjective screening test, which proved substantial heterogeneity with a combined prevalence estimate of 36 %. Four studies provided an estimate based on objective measurements (clinical or instrument tools), which were substantial heterogeneity with a pooled prevalence estimate of 81 %. 

Conclusions: The findings confirm that more than one-third of the multiple sclerosis patients are suffering from swallowing difficulties. Therefore, we should be careful to interpret the pooled estimate due to the substantial heterogeneity between studies

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


  • I have had minor swallowing issues for years. Before I was even diagnosed I realized that it was hard for me to eat soup. I found a way around it, I have to keep the soup in my mouth for a second and then swallow. I would continually swallow wrong and cough or get it partially down the wrong pipe. At one point I also started having spit takes when I would see something very funny with water or soda in my mouth. I'm very careful now about drinking while watching something funny. Both of these things I just thought were kind of odd and nothing and then I came to believe that it was MS related. I'm lucky it's not too bad and mostly not even noticeable. But every once in a while I have food in my mouth and can't swallow and it takes some effort to get the process started. Like I'm stuck or something.

    When I try to think of why this would be an MS thing my guess is that the swallowing process may be a complex set of muscle movements or that it requires very precise movements to function correctly. I was going to say my MS was not severe but walking is somewhat difficult for me. A half mile is a lot, a mile is not something I try, so I guess swallowing issues are feasible. Sad.

    • Me too, from recent/current relapse. Its not too bad, as in 1 in 10 times I eat or drink. I saw speech and language therapist and got some exercises. Basically I need to be very mindful as to how I eat and drink. And hope it goes away soon:)

  • Please remember that we dont live in the movies where the heimlich is the first port of call. The heimlich has risks like a ruptured spleen so clear the mouth and a sound slap on the back may be all that is needed. Get trained by a proper first aider it may save a life.
    A study said last week that in Norway there is a better chance of survival from life events liie heart attack than UK as they have a greater awareness of first aid and are more likely to do something when needed.
    Have you seen how to do mouth free cardiac massage?

    • 'Have you seen how to do mouth free cardiac massage?'
      Lol, I'm first aid trained with Red Cross and St Johns Ambulance but you really wouldn't want me to be doing any cardiac arrest -mouth or mouth-free first aid!! Vinnie Jones, I'm sure not.

    • Vinnie Jones is an ex (English) Welsh football player known for his "take no prisoners" type of play. He became an actor
      For those interested in the video, 999 is the emergency number in UK, 911 in USA and 112 in EU. A Soveriegn is a British real gold coin with a nominal value of one pound sterling. Prior to 1932 it was a fully circulating coin within Britain's then Gold Standard currency. Today it is used as a bullion coin and is sometimes mounted in jewellery, such as a ring on in this case a necklace.

      This is from the British Heart Foundation..enjoy. Forpeople with a fear of mouth to mouth

  • I had swallowing difficulty post diagnosis, it was put down as an anxiety reaction (that also reinforced itself!). Hearing that and practicing some good mindfulness habits allowed me to calm down and these problems ceased.

By Prof G



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