Esophageal dysmotilty/poor gullet peristalsis/ineffective oesaphageal motiltiy

[stevenski]

I have this condition recently (re)diagnosed as "severe non-specific esaphageal dysmotilty"("poor peristalsis throughout whole length of esaphagus") for solids, not liquids, via "stage manometry", ie. a catheter up the nose and down oesapohagus through LES(lower esophageal sphincter) into stomach.I have had gastroscope/endescope quite recently too: no cancer, lesions, stricture, ulcers. I have had it 11 years but it has slightly worsened and i have also(possibly related ) had acid reflux/NERD/GERD for 16 months, treated currently with between 40mg and 60 mg of esomazprazole.(i have done a seperate post on GERD etc). I live in the UK; and this is the important bit; the only two drugs licensed for the condition here are metaclopromide and domperidone("motilium"); the former i tried in 2000, when originally diagnosed; no effect at all, but no side effects, so willing to try again, after discussion with gastro-enterologist; domperidone i had fairly severe reaction when tried few months ago(lack of co-ordination of movement) and G.P advised not to take any more.I have m.e/chronic fatigue syndrome, muscle weakness from which is, I believe, though UK doctors unable to make link,the direct causation of the secondary condition(and the GERD )

What I am interested in finding out, from people's reponses, are:

1. Is there anyone in the UK who has managed to get any partly effective/wholly effective drugs to improve the condition, eg "off label", ie usually licensed and prescribed for a DIFFERENT condition, be it NHS or private practitioners

2. Has anyone had any alleviation/ reversability of the condition via alternative, herbal means etc?

3. How many people who have m.e/cfs also have this condition?

My belief is it is more common than thought, and quite often a co-morbidity of the primary condition. People may experience it as intermittent or, like mine, ongoing "food getting stuck in foodpipe/ esaphagus/gullet", usually temporarily, tho boluses may also occur; and certain glutinous foods(rice, pasta,) or stringy meat(beef, lamb) have to be WHOLLY avoided; it is NOT a difficulty with the swallowing action itself, ie is NOT in the throat area , but towards the top of the chest, ie abit lower down; if it involves difficulty in the initial swallowing action that is something more serious and different.

Your responses?Thanks

Steve("Stevenski" in chat)

 

[Diva55]

Hi
I've had the food getting stuck about half way down my gullet (about mid chest) for some time. I have to, in effect, burp up to get it down but not with acid reflux. - very painful & unpleasant.

I had a gastrocopy a few days ago & they diagnosed a Sliding Hiatus Hernia & prescribed Omeprazole for 1 month & then as needed.

So it seems that we relate on the food getting stuck bit but have different diagnosis - I presume because they didn't find any Hiatus Hernia's in your gullet.

So basically I was wondering if they might have missed a Hernia with you? Just throwing it out there & I may have missed the mark here!

 

[stevenski]

Thanks diva. Don't know whether thy checked for hernias of any kind. Would this show on a gastroscope(endescope) do you know and/or barium swallow? Symptoms similar. Thanks Steve

 

[Enid]

Just to say stevenski this was very much part of my own array of symptoms. As if the action of ingestion and peristalsis had ceased to function. Barium enema revealed nothing. Domperidone seemed temporarily to ease. But the muscles involved in mastication and swallowing (and speaking) are still sluggish. Sorry can't help more. Worse cases are listed (eg. Norway) where tube feeding for a small minority was needed for a while only. This is simply to tell you it is/can be part of ME. - yours not that serious I trust.

 

[Diva55]

Thanks diva. Don't know whether thy checked for hernias of any kind. Would this show on a gastroscope(endescope) do you know and/or barium swallow? Symptoms similar. Thanks Steve

It showed on the gastroscope (camera down the throat). I believe is quite obvious as it's a lesion.

They took a biopsy as well but think that was to test for bacteria.

I had a barium, ultra sound, camera both ends about 2 years ago as I had a painful swollen stomach - I was diagnosed with chronic IBS - but who knows that could have been connected with the hernia which they had missed at the time.

So what I'm saying is that a gastroscopy should see a Hiatus Hernia - mine is 2cm.

Might be worth asking your GP / specialist if they checked for a Hiatus Hernia to just tick that off your list?