I thought I might get somewhere as GP consented to my having a gastroscopy. The result is mild gastritis and no H Pylori which he says means I get no treatment. He will investigate no further. I am still having swallowing difficulties since February. I have no appetite but my hubby makes me eat at least two invalid type meals a day. Bless him. The meal will stay just beyond my throat for hours and not move. I drink as I eat as I have such a dry mouth/throat.
I decided to look up private medical procedures. Guess what? I can have a consult but if I want an investigation, I have to have GP referral! What is that about?? If I am not bothering my useless GP and therefore my local hospital what has it got to do with them?
There are investigations to see how food goes down. Anyone had it? What can it diagnose?
I am back to square one, hoping my all seeing all knowing Professor can identify all my many symptoms and say LUPUS related the lot, do this, take that, sorry no treatment and restore my sanity and usual aches and pains to the back burner again. No pressure. 22 days and counting.
Hope you are all as well as can be today.
Much love
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Written by
Footygirl
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In my opinion, if you want to go private, your GP is required to refer you to a gastroenterologist. When my chronic gastritis & oesophagitis got extra bad (back 12 years ago, way before my lupus was recognised) we decided to dip into our piggy bank & pay at least for an initial gastro evaluation because I was so poorly & my NHS GP + local ENT clinic had already messed me around big time for months without really helping at all 😖GRRRRR...so we couldn't bear for me to wait another 3 + months. Once the gastroenterologist had done my gastroscopy + biopsies privately & found chronic gastritis & oesophagitis with metaplasia of a gastric type etc etc,, he referred me directly to the NHS motility unit for tests on the NHS to see how my food goes down...e.g.oesophageal manometry, 24 hour pH tests etc
My feeling is that if you're prepared to go private, you need to instruct your GP to refer you for a private appt with a gastroenterologist of your choice. Then you get the printout of your NHS gastroscopy test results from your surgery & take that along to discuss your case with the gastroenterologist at this private appt. It seems to me that the gastroenterologist will then give you his considered opinion and tell you whether he can & will refer you to a NHS motility unit for the tests you want
In my experience the tests to see how food goes down are motility tests. Together with clinical examination, blood test results & history, motility tests could help your prof to consider how immune dysfunction may be affecting your GI system etc. In fact, your prof also could refer you direct to a NHS motility unit for these motility tests
PS the link I've included is to the IFFGD website which features great info about all aspects of our GI tract...including advice on lifestyle management techniques, which I figure you already are practicing: all of us know how important the lifestyle stuff is when we're managing poor GI function, for whatever reason (eg graze: avoid large meals. Take small mouthfuls & chew well before swallowing. Avoid caffeine & alcohol. Lie down with upper body raise on an upward incline etc etc) eg Key to my management of my poor upper GI function is fresh ginger tea: I sip this constantly all day long & it helps to ease my constant swallowing & digesting probs
I'm sorry to read that you still feel frustrated. I get the swallowing issues. Don't think as bad perhaps. It's really difficult particularly since you have to eat!! I hope that you get further forward with it all and there is treatment that can help.
I imagine trying to get your appetite back might be a starting point that you can try yourself. Maybe it feels such a battle you've lost all joy in eating?
I know I have to eat small amounts, make sure I chew properly, drink loads.. But sometimes I suffer because I'm stuffing my face with yummy food!
Perhaps trying some new recipes etc. take time in making the food and eating it.
From a medical perspective hope to get further forward soon.
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