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)
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)
