“Our guest post on dysphagia and choking generated some interesting comments. Despite this being an issue most of you want to avoid thinking about, and discussing, it is a problem that affects a large number of MSers and has treatment and management implications.”
“Dysphagia simply means discomfort or difficulties in swallowing. It can occur with solids and liquids and when severe can lead to aspiration, i.e. food goes down the trachea into the airways, or choking when it blocks the airway. Dysphagia usually occurs when MS is advance and associated with severe disability, but it can occur earlier in the disease as a result of a brain stem relapse. The brain stem is the part of the brain that controls swallowing. The study below from Brazil found dysphagia in 90% of the MSers they studied; this is a surprising result considering the average EDSS in this study was just below 4.0. Based on my own clinical experience 90% seems very high, unless I am missing dysphagia because I am not looking for it. Why it important to address this? Prevention. Dysphagia is the forerunner of aspiration pneumonia, a common cause of admission in MS and a common cause of death in advanced MS. As part of a holistic approach to MS we need to try and prevent aspiration pneumonia. I would therefore appreciate it if you could complete the following short survey; it includes a short dysphagia self-assessment.”
“If after completing this survey you think you have a swallowing problem please discuss it with your neurologist or MS nurse. You may need a formal assessment to investigate the problem.”
Fernandes et al. Oropharyngeal dysphagia in patients with multiple sclerosis: do the disease classification scales reflect dysphagia severity? Braz J Otorhinolaryngol. 2013 Aug;79(4):460-5.
OBJECTIVE: To identify the frequency of dysphagia in MSers and neurological indicators that can represent the performance of swallowing.
METHOD: In this study (cross-sectional) 120 MSers underwent Functional Assessment of Swallowing by flexible nasal-pharyngo-laryngoscopy and the results were compared with the scores of the rating scales: (Clinical Evolving Forms of Disease, Functional Disability Scale for and Scale Systems Extended Functional Disability [Kurtzke Expanded Disability Status Scale]).
RESULTS: Dysphagia was found in 90% of MSers. Among the clinical forms of the disease, the progressive forms (primary progressive and secondary progressive) were more frequently associated with severe dysphagia, while the relapsing-remitting form presented more often mild and moderate dysphagia. Regarding the Disability Scale for Functional Systems, cerebellar function, brainstem function and mental health were associated with dysphagia, especially in the severe form. Regarding the Extended Functional Disability Scale, higher scores were associated with severe dysphagia.
CONCLUSION: Dysphagia is common in MSers, especially in those with greater impairment of neurological functions.
Another vile symptom to add to the long list of vile symptoms which MS serves up! The idea of keeping someone going when they get to 'advanced MS' seems to be cruelty personified. Any other under-recognised vile symptoms we should be aware of? Copying with MS is a daily challenge made worse by the knowledge that a raft of symptoms which destroy your quality of life are on the horizon. All we are ever offered are sticking plasters. Surely stopping progression must be the priority for MS research teams. My comment is not directed at Team G who put their heads above the parapet by running this blog, but are aimed at the hundreds of teams around the world who beaver away without achieving anything. The UK seems to be cutting edge with the current trials for progressive disease being trialled which will not get a license – simvastin issue. What are the US, French, Dutch, German, Scandinavians teams delivering? Almost looks like a cartel where noone wants to make a breakthrough (progression or repair) as the research industry monster comes crashing down.
My first referral to a neurologist happened because of choking while drinking liquids. I didn't actually get a referral for a swallow study until after ms diagnosis, roughly a year later. At that time I had issues with my tongue. It's much improved, but I live with some issues. This frightens me more than most possible ms developments. Not for pneumonia so much as the chance of needing a feeding tube.