oesophageal dysmotility

[volvox45]

Hi people, I thought you might be interested to hear that I did get a referral to Prof Denton's Royal Free clinic really quickly and was seen on 3rd December for a very thorough consultation and got a letter copied to my local hospital and my GP today. It recommends antibiotics for the SIBO, PPI for the silent reflux, and annual alendronic acid infusion for my osteoporosis. Of course all these depend on my GP and hospital actually taking action so I'm not holding my breath.

What puzzled me is that they report "severe oesophagal dysmotility" – obviously true, but how can I have that and be totally unaware of it???

[Poppy221]

One answer is it came on gradually. I developed PAH with heart strain and thought the symptoms were old sensitivity in my lungs and stomach ache.

[volvox45 in reply to Poppy221]

Yes, that must be it, I think I don't have any symptoms at all but perhaps what I take to be "normal" is symptoms!

[Bruffingtons2]

Good to hear that volvox45.Great clinic isn't it?

Were your hospital OK with you going there?

Hope you get the treatments.

Brufingtons2

[volvox45 in reply to Bruffingtons2]

It's a lovely clinic and the best thing was being able to talk to people at length and in detail and they understood what I was talking about! And I really enjoyed the nail fold capillary microscopy, that was fun. But I was really disappointed that in the end it comes back to my local GP and hospital to administer treatment, and that the Royal Free doesn't want to see me for a year. I happened to have a (five minute) phone consultation with my gastro man at the local hospital and he wasn't interested except had I seen his old mate Charlie 😟

[Bruffingtons2 in reply to volvox45]

Whereabouts (roughly are you?) My local hospital have been a b it funny about me going...Bruffingtons2

[volvox45 in reply to Bruffingtons2]

Oh dear, how unreasonable. They should have your best interests at heart! Fortunately I am in North London 20 mins from the Royal Free and my local hospital is the Whittington where many of their consultants either come from or go to! – so I don't think there should be any resentment. In fact my rheumy woman works at both.

[Sanmateogirl107]

do you vomit food i do solids especially. omeprazole for reflux, try putting food in the blender with broth and making it soft. start with small portion through out the day. mint tea is good, ginger is good, i wonder if your stomach is not herniated as mine is. ask about nausea meds that melt in your mouth. meditation helps. good luck love julie

[volvox45 in reply to Sanmateogirl107]

As I said, I have no symptoms at all. I certainly don't vomit, ever, or experience any sort of nausea and I'm not aware of reflux. The only sign I have is what I saw on an x-ray otherwise I wouldn't know I had any problem. But thanks for your thoughts Julie!

[Sanmateogirl107 in reply to volvox45]

if your in pain the other thing i try is wild lettuce extract ebay or d mt rose herbs has it. 10 drops under the tongue morning and night. hope it works love julie

[volvox45 in reply to Sanmateogirl107]

That's very kind, Julie, but as I keep saying I have no symptoms! No pain! (thank goodness).

[Mylreaclairelee]

Hi, so glad you got to visit Prof Denton. But how were they able to ascertain the dysmotility. I have never been given a diagnosis although I know it to be the case.

[volvox45]

My local hospital did a barium swallow test where they filmed it as I gulped! Fun (not). They said my oesophagus is bottle-shaped rather than straight up-and-down. The gastro consultant also wanted me to do a manometry procedure where you swallow a sort of tube/camera that can measure the pressure in your oesophagus but it has to stay in 24 hours with the end taped to your cheek!!! – and I couldn't face that so said no thank you...

[SylvieJ]

That is great news about your Consultant Appointment. I hope what he recommended works

[volvox45]

He recommended antibiotics to try and stop the constant diarrhoea, which I will start tomorrow – but of course that's only a temporary fix. Also omeprazole for the silent reflux but I won't feel any benefit as I don't have any symptoms! This dreadful condition isn't curable, and it will progress (having a low day today!).