ineffective esophagus Contractions/motility?

[Lkakpk]

So since birth of my second child a year ago i have been struggling with pain when swallowing in chest , almost like a winded feeling - drink and food . I also find things like crisps,nuts ,cereal feel stuck in my throat for hours aftwrwards . i had endsocopy which was completley normal and then recently had mamonetry procedure which concluded weak and absent swallows - doctor didnt seem concerned and said its treated with Ppis for any acid and also meds to stimulate contractions when swallowing but if i cN handle symptoms i can just monitor . Im only 34 and im worried how i can have weakness at this age ? Does anyone have similar synptoms or diagnosis and has it got worse ? Also worried it could be start of something more serious as im finding the stuck in throat feeling is more intolerable recently …

Hi @Lkakpk, and sympathies.

I've just been diagnosed with this. I definitely have Diffuse Oesophageal Spasm and possibly also achalasia.

These oesophageal motility disorders are rare conditions. Many GPs know little about them. You really need to see a consultant with specific experience in this area. I saw one about three weeks ago. Since then I've had manometry, barium swallow and CT scan, and I'm seeing him again next week. It's sounding like I'll need another endoscopy due to what was seen at CT and on Barium Swallow.

There are some excellent FB groups you should join. I asked lots of questions there, and did a lot of reading. I was able to get recommendations there for specialists who would know how to diagnose and how to help. I've joined UK Achalasia, Oesophageal Dysmotility Disorders and Achalasia Support Group. Nip over and join now.

BTW you are absolutely right to be concerned and to want something done about this now, before it gets worse. They are progressive conditions and there is no cure. The sooner the issue is recognised the more successful any available treatment is likely to be. I recommend finding an appropriate specialist and then paying for an initial consultation (normally about £250). It’s money very well spent, particularly since your GP clearly doesn’t have a clue and plans to leave you to just get on with it 🤬

Feel absolutely free to drop me a line if you'd like to, with any questions. I'm new to this, but have a learned a lot in the last month!

@Shiveringinthecountry Thanks for reply . So mine is not Achalasia nor spasms . Basically intermittently my esophagus doesnt contract when swallowing Gastro doc said unlikely to progress . I feel im in a bit of a grey area in all honesty ! .

Hi there,

[Edit: apologies. After I sent this I re-read your original post and I see you have had a manometry test. All I can suggest is that you go and ask for help in the FB groups I’ve mentioned. If you’ve seen a gastroenterologist with real experience of achalasia then they should have given you some other kind of diagnosis/discussed with you the possibility of your condition progressing to achalasia, if they believe you don’t already have it. I hope you’ll pursue this and try to get some answers.]

I'm not a doctor, but I've learned enough in the past month to know that if you're not having peristalsis/effective peristalsis then you may have achalasia.

Have you had a manometry test? That is the gold standard diagnostic test for oesophageal motility disorders. Without one no doctor - no matter what their qualification - will be able to diagnose you. You really do also need a barium swallow and endoscopy, but manometry is the test for motility disorders. No doctor with real experience of these disorders would fail to order such a test for you.

I would strongly encourage you to go and look at the FB groups I mentioned. The first one (UK Achalasia) is linked to a very active Achalasia charity (Achalasia Action). They're full of people with huge experience of this area, and although two of them have achalasia in their names they also have many posts about O'l motility disorders generally.

It's hard to find information about these conditions until you know where to look. I've been asking intermittently for a couple of years (including on here) whether anybody else had experienced the kind of regurgitation I've been having (containing no discernible acid). I didn't find a single person. I've found them now, though.

Good luck to you. Unfortunately I think the reality is that you'll need to be willing to push this for yourself in order to get the treatment you need