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June 7, 2021 at 9:43 am #195047Dysphagia (swallowing) difficulties
Hi All
I would like to know about other experiences of Dysphagia. This issue has crept up on me and combined with jaw tightening and reduced strength in arm I use to feed myself, I feel it’s built to a perfect storm. So far I have had a SALT assessment including a swallow test and a fluroscopy which is a real-time Xray that captures how I swallow food and liquid with barium. I await an appointment to find out what the report jargon means. I admit to googling some of it!!
Be interested to hear from who has experienced this.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
June 7, 2021 at 12:51 pm #195053Reply To: Dysphagia (swallowing) difficultiesThat does indeed lk like a perfect storm.My own experience has been exceedingly mild and slow growing, simply altering my limited diet has for the most part solved it for now. Has the SALT given you any ideas not just on its cause but also on how it may be ameliorated. I am sure it will be laid at the door of MD, but me being me would wonder why now and why all the things together. Are you having a more generalised decline of which this may be a part? Do please let us know what the Barium Swallow test reveals.
Mike
So many love songs, so little love.
June 11, 2021 at 8:11 pm #195149Reply To: Dysphagia (swallowing) difficultiesHi sars, my journey into md started about 4 years ago, all of my problems started then, including dysphagia, ptosis, arthritis, and gluten intolerance. Firstly a digging sensation in the jaw and mild dysphagia and pain in right eye and drooping of eyelid and right knee arthritis. Then the following year the dysphagia escalated till I struggled to eat yoghurt, after realising I had a gluten intolerance, by going on a strict gluten free diet my swallowing improved although I still have swallowing problems and have to be careful. I now have joint and back pain which I just had xrays for. I have noticed on here that seems to be quite common md sufferers on here. Of course I am not suggesting you have problems with gluten, I notice that you have a weakness in your arm I also have a problem with my arm and excruciating pain when moving it. Does anyone else in your family have these problems. Hope you find this of some help. Cc
June 26, 2021 at 6:55 pm #195372Reply To: Dysphagia (swallowing) difficultiesThought I’d update you on the swallowing investigations.
The fluoroscopy appointment went very well. It involved me sitting sideways on so the X-ray would pick up the image of my mouth and throat. Starting with water, I was asked to swallow different thicknesses of liquid (everything has barium in). Firstly, a single sip from a spoon swallowed on demand then a sip and swallow through a straw (my norm). The third time I was told to take multiple sips. After liquids, I moved to level 4 which was mushed up banana and repeated the process.
2 weeks later I got the report through and a week after that I had a video call with my Speech Therapist from local SALT team to talk me through the video images. I have to say, it was quite fascinating. It confirmed a few things that I thought were happening as well as giving me a better understanding of what isn’t working mechanics-wise.
The main area affected is the pharangeal phase. My tongue is not retracting enough, my hyoid bone is not moving out the way properly which in turn is not shifting the vocal chords out the way when I swallow. I could see where my epiglottis was not going flat enough to seal my airways off.
In terms of what can be done, I have been given some exercises to do 5 times a day. I also had advice on food types and consistencies which I already knew about. I’ll have another video call in 6 weeks to see if I have noticed any improvement after the exercises which I’m actually doing as I write this post!
Happy to give more info if anyone wants to ask anything.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
June 27, 2021 at 12:30 pm #195373Reply To: Dysphagia (swallowing) difficultiesI have always believed it is a significant step forward if you know what is going on with your body, and clearly through the good clinicians looking after you , you now have that view. I do hope that knowing these things will lead to a concrete improvement for you.
Mike
So many love songs, so little love.
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