Wrong test? Desperately need help..!

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Daxter
Regular Member


Date Joined May 2013
Total Posts : 406
   Posted 11/23/2013 4:20 PM (GMT -6)   
I've got good news, bad news and a heap of questions. The good news is I got a referral for a manometry and 24 hour pH probe. The bad news is it's a single probe test, and not at the hospital I requested. I chose a hospital that specialised in double probes so that I can diagnose LPR, and even contacted Restech themselves about where to get their probe tests done in the UK.

Now I'm terrified I'll get false-negative results like everyone else with LPR. If I do that's the end of the investigation and I'll be struck off with anxiety. It's virtually official as I'm already in the bad books of my doctor and family after pressing so much; I stand to lose all I've struggled for if I get fake results. I therefore badly need some help with these questions, please!

- If the Manometry shows my LES and UES work properly, how far does that go in disproving LPR?
- Am I within my rights to object to the type of test being done, and where it takes place? If I am, how should I word my objections?
- If both tests come back negative, could I still be eligible for LINX surgery?
- In the event I somehow get a positive result for LPR, who can I go to for help in coming to terms with it? My greatest fear in life is getting a lifelong illness, and LPR has already severely reduced my quality of life; I'm worried a diagnosis will drive me over the edge...
- I'm no good at swallowing things whole! Will I be ok in this test? Gotta admit I'm scared stiff about it already, right version or not, but I'll be more determined about it if I can be sure it'll show something.

I just refuse to accept anxiety as the sole cause of my horrid symptoms at this point, after a whole year of suffering but if I don't do something ASAP, nobody will ever believe I have LPR. They denied the evidence in my rapid spit test and refuse to believe in Dr Kouffman's research, so this is my only shot to prove I AM suffering. Please help any way that you can, I'll be very grateful and would hope to return the favour if I can..!

Post Edited (Daxter) : 11/23/2013 2:27:58 PM (GMT-7)


mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 11/23/2013 4:50 PM (GMT -6)   
My own feeling, based on my own capabilities for these tests, would be to do it once and do it well! You could postpone the test whilst you hold out for the test of your choice.

My reason for saying this is that my tests were normal, but there's just no way I could put myself through it again. I was very disappointed with my NHS pH monitoring - I was sent to a hospital very far from where I live, a big teaching hospital. But the test was the most basic, no buttons to press and all they wanted me to write down was the time symptoms start and stop (as if there's a neat on/off switch!!) and the time you start and stop eating. No alcohol, no fruit juice or anything else considered acidic was allowed, thus banning known triggers for the test period! I was nevertheless pretty symptomatic but came away with a Demeester score of 4!

I found getting the wires down very difficult and have no plans to repeat it but if I'd known I wasn't going for the best all-singing-all-dancing version of the test I would have said no!

On the other hand, if you're up for a repeat there's no harm (other than psychological torture) in seeing what the test does show and then moving onto a better one!

MMM
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 11/23/2013 9:15 PM (GMT -6)   
What kind of probe is it?? Bravo? I just had the Restech but have to do it over because they didnt calibrate it correctly. What are your symptoms?

Daxter
Regular Member


Date Joined May 2013
Total Posts : 406
   Posted 11/25/2013 4:34 PM (GMT -6)   
@ lobstahguy, the letter only says a 24 Hour pH monitor. It's not ResTech; my local hospital doesn't do that. My symptoms mostly consist of constant burping, but also occasional throat clearing and a tickly throat.

@ mudmagnetmum, If I could do this test and then the Restech one, I would, but my doctor already has had enough of me; she'll never refer me to have what she thinks is the same test a second time. :p

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 11/25/2013 7:51 PM (GMT -6)   
Daxter, have you had an ultrasound and HIDA scan of your gallbladder? Could you switch doctors? Yours dont sound very compassionate. I know how this is. I had a doctor say to me "we all have to die someday" I even had one doctor turn her back on me saying i was trying to make her look bad by getting a second opinion. Its unbelievable.

Daxter
Regular Member


Date Joined May 2013
Total Posts : 406
   Posted 11/26/2013 9:00 AM (GMT -6)   
lobstahguy said...
Daxter, have you had an ultrasound and HIDA scan of your gallbladder? Could you switch doctors? Yours dont sound very compassionate. I know how this is. I had a doctor say to me "we all have to die someday" I even had one doctor turn her back on me saying i was trying to make her look bad by getting a second opinion. Its unbelievable.


Yeah I had both scans when I went to have my appendix removed, to make sure my pain wasn't coming from somewhere else. They're both clear.

RobUK74
Regular Member


Date Joined Nov 2013
Total Posts : 24
   Posted 11/26/2013 6:35 PM (GMT -6)   
Hi Daxter - having had both in the UK in September my experience share would be this.

Make sure that you are referred to the right person to perform the manometry and pH testing - my surgeon had a short list of three consultants he would refer to and that was it. However it gave me confidence that I was in very capable and confident hands.

I have to say I too was very nervous going into the testing, however the staff were brilliant very patient, re-assuring and calming. In my opinion out of the two tests the manometry was the most unpleasant and uncomfortable. Like others on here I had to stop medication seven days before - that was hell and I have never drunk so much gaviscon in my life which I was allowed until 24hrs before, and like others was not allowed to take trigger items eg alcohol. I too was worried therefore that the test results would be normal. How wrong was I! After the manometry the consultant immediately showed me the results and talked me thru what the pH test would do.

I had to record when I had anything to eat, drink, exercise, sleep, etc as well as press the button when I felt any heartburn. Interestingly although I felt I had few episodes, the pH test proved otherwise and basically my tolerance level to acid pain had grown so much that I only pressed the button when I had acute attacks!

A week later I was back in the surgeons office and he showed me the results and was clear about the need for surgery.

Hope this helps, good luck!
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