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???
Written by
volvox45
To view profiles and participate in discussions please or .
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 😟
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.
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
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!
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
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.
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...
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!).
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I'm disappointed with my illness with NHS doctors and nurses ! 
I don't understand anything about this condition and cant seem to find any answers can anyone please help cos its driving me mad..
Any advice greatly recieved
Abnormal ECG
