New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Dysphagia - neurological ?

Discussion in 'Neurological/Neuro-sensory' started by Alexi, Mar 2, 2017.

  1. Alexi

    Alexi

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    Anyone suffer from this distressing symptom ? Been suggested I see a neurologist and I was wondering if anyone on here has any experience
     
  2. daisybell

    daisybell Senior Member

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    Have you seen a speech language pathologist?
     
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  3. Mohawk1995

    Mohawk1995 Senior Member

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    Agree with @daisybell I work with SLPs and they have expertise in the functional aspects of this. To understand what may be causing might take a neurologist or Physical Medicine and Rehab physician who is knowledgeable about ME/CFS. With the latest post today on Small Nerve Fiber neuropathy being found in a different systemic disease (EDS), the chances of it being an issue in ME are quite high in my opinion. A neuropathy impacted your swallowing muscles could then account for some issues. Definitely get it checked out. You do not want to have any aspiration that could lead to Pneumonia!
     
  4. charles shepherd

    charles shepherd Senior Member

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    Basic information re swallowing difficulty (dysphagia) in ME/CFS from the MEA

    Difficulty with swallowing is a 'red flag' symptom that you MUST go and see his doctor about - if you have not already done so because this is NOT a characteristic symptom of ME/CFS

    However, it is a problem that can sometimes occur in people with more severe ME/CFS and I am dealing with such a case at the moment. And in the past, I have had patients who have had to be tube fed or have percutaneous endoscopic gastrostomy feeding carried out as a result.

    Difficulty with swallowing is also referred to in the MEA purple book (clinical assessment section on page 51) and in the CMO report on ME/CFS (section 4.2.1.2) - information that could be passed to a GP

    Whilst it is possible that dysphagia could be due to a gastric motility problem in relation to ME/CFS (if you have a copy of the MEA purple book the link with ME/CFS is summarised and referenced in the clinical assessment section) there are other explanations which do need to be considered and possibly investigated

    So this is not a problem which can be diagnosed and properly managed on an internet discussion forum until you have been given a medical explanation as to why it is occurring

    As far as management is concerned, this will very much depend on the cause.

    If it does turn out to be related to ME/CFS I would suggest that the GP is asked if you could be referred to an NHS dietitian for expert advice on diet and nutrition. We also have a very experienced dietitian - Sue Luscombe - here at the MEA as part of our medical team who could be consulted.

    Useful general information on difficulty with swallowing (medical term = dysphagia):
    http://www.nhs.uk/conditions/Dysphagia/Pages/definition.aspx


    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  5. Mary

    Mary Senior Member

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    Dysphagic can be caused by hypophosphatemia - low phosphate: https://www.symptoma.com/en/info/hypophosphatemia

    If you scroll down 2/3 of the page to "Presentation", and then to "musculoskeletal system", you'll see it mentions dysphagia. So a simple blood test should show if this is the cause of the problem.

    I've experienced this. I don't know what exactly caused my low phosphate - whether due to refeeding syndrome (e.g., when I added in B1) or maybe other sequelae of ME/CFS (there is something called phosphate diabetes associated with many cases of ME/CFS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2360873/); all I know is when I added in high phosphate foods (like kefir), my symptoms abated.

    Ordinarily I have no problem swallowing handfuls of pills every day; however, occasionally the seem to get stuck in my throat and take forever to go down (literally hours) and I finally made the connection - when this happens, I load up on kefir and sunflower seeds (both high in phosphorous) and the symptoms go away.

    One other symptom I had, especially in regard to the B1, was severe fatigue after an initial energy boost, and I believe this was due to a form of refeeding syndrome causing my phosphate levels to tank.
     
  6. Alexi

    Alexi

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    Barium swallow shows issue lies in initiating the swallow. I find my swallow gets weaker as the day goes on and I've lost weight since this latest episode of dysphagia. Tests are weeks away and I don't know how to manage best in the meantime
     
  7. daisybell

    daisybell Senior Member

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    High calorie food if you can... ice-cream, cream etc added to puddings is a good way to get lots of calories in. Have a few biscuits with each hot drink you have - dunk them if it's easier.. snack through the day. Try to find things that you like that are easy for you to swallow...usually easier food is soft and moist. There are some good drinks available - I don't know where you are - but things like Up'nGo have the equivalent of two weetbix in a small carton, and that can be an easier way to take in nutrition. Plus if you can get complan in the supermarket, that will boost your intake...
    Hope some of that is helpful... good luck!
     
  8. Booksellercate

    Booksellercate

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    I went to a doctor with difficulty swallowing in 2003. They did an endoscopy and found nothing wrong. I was put on Prozac, then Clomipramine as it was dismissed as anxiety. The anti-depressants helped a little. But since then, I've never been quite the same. I can't eat large amounts of food-and also have trouble swallowing pills-and food does seem to get caught in my throat unusually regularly.

    Last year I became suddenly very unwell (diagnosis pending!) and I also realised I was B12 deficient. I got copies of my medical records and saw that the blood tests in 2003 had shown I had macrocytosis, which is implicated in B12 deficiency. It's a common symptom amongst pernicious anaemia patients. Maybe check your B12, if you haven't already.
     

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