Results in: PH test normal...no reflux! Can someone please explain this to me?

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theacidrefluxman
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Date Joined Oct 2009
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   Posted 2/2/2011 2:17 PM (GMT 0)   
Hi all,

I just got my results from my GI and will explain below. Anyone have any idea what I might be experiencing? I've found this forum as valuable as my GI for info, probably more-so, so the first thing I wanted to do was come here to explain the results I just got to see what members might know about it.

If you don't know me, I've been struggling with heartburn pain for 3 years, and especially over the past 8 months. In the past PPI's took it away, but recently they have given me a pain in my right abdomen, as have H2 blockers. Fortunately, H2 blockers take the heartburn away for the most part, although I take half doses to keep the right side pain manageable.

So I got my results for the PH test, and the Dr. said they were completely normal (I felt about 10 episodes of heartburn during the 24 hour study, including when I woke up in the morning). He said my motility wasn't normal, that i showed little pressure throughout my esophagus, but that he didn't know what to make of it (it wasn't Achalasia or anything like that, plus, I have no problems swallowing, etc., at all).

He is sending me for a Barium swallow, some blood tests (not sure which), and a HIDA scan (for the right side pain, as I told him about a study a fellow forum member posted regarding gallbladder issues w/ ppi's).

I am just posting to see if anyone else has seen similar or knows what could be wrong with me. The results just don't make sense with the feeling I am getting, and the past success of PPI's for me...

I was sure the test would come back very HIGH acid and that I would be in line for surgery. I almost took it for a given....I figured I was one of the people who eventually the pills don't work for and who needs surgery.

theacidrefluxman
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Date Joined Oct 2009
Total Posts : 739
   Posted 2/2/2011 3:58 PM (GMT -6)   
looks like nobody has had/heard of someone in my type of situation... :)

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 2/2/2011 5:39 PM (GMT -6)   
The motility issue could be causing the heartburn feeling?

If manometry shows low pressure in the lower sphincter, gastroesophageal reflux disease (GERD) may be to blame for discomfort. Stomach acid or bile flows back (refluxes) into your esophagus through a weakened or malfunctioning lower sphincter.

In rare cases, low pressure in the lower sphincter could indicate scleroderma, a progressive disease that leads to hardening and tightening of the skin and connective tissues. Manometry can reveal motility disorders, such as achalasia, where the muscles within the esophagus don't properly pump food down through the esophageal tube.
Joy

theacidrefluxman
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Date Joined Oct 2009
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   Posted 2/3/2011 7:42 AM (GMT -6)   
thanks couchtater, you successfully scared me with your scleroderma comment there :)

The thing is if it were GERD it should be showing up on the PH test...

dencha
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Date Joined Feb 2009
Total Posts : 7181
   Posted 2/3/2011 8:49 AM (GMT -6)   
Hi ARM,
Did you get a Demeester score from your PH monitor? The thing is this. Surgeons/GI docs consider anything that 14 or below "normal". I suffered from reflux (and asthma made worse by it) for years, and had two PH tests before I had surgery (to try to help my asthma). Like you, I was sure the tests would show a great deal of reflux, as even on PPI's I had breakthrough reflux, my lungs were horrible (my PCP and asthma docs both were confident it was because of my reflux), and during the tests, I suffered greatly. Yet, my scores were first 4, then 14. The test that was at a 4 sent me home for another 3 years of suffering and high doses of steroids. The 14 score was the one (in conjunction with all the communication from my PCP and asthma docs) that provided the GI doc with the cover to send me .to talk to a surgeon (if I wanted to--which I did).

I'm not saying that you need the surgery. Your problem may be something completely different, and the surgery would only complicate it. In my case, it helped improve the condition of my lungs.

Good luck with your tests.
Hang in there...things will get better!
Denise

theacidrefluxman
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Date Joined Oct 2009
Total Posts : 739
   Posted 2/3/2011 10:04 AM (GMT -6)   
thanks for the advice denise,

i called the dr., went to the hospital, and called his other office to really get on top of them about doing the tests asap. I am the type that worries, and I am really scared that it could be a serious motility disorder like scleroderma or something else (i had looked this stuff up before couchtater mentioned it). They said they will call the dr. and are waiting for his order for the tests. I said I wanted the blood test for scleroderma as well and want to do all the tests asap so that I can stop worrying.

I hate periods like this, when there is no diagnosis and I tend to think worst-case scenario. I just want to try to stay positive, but if the tests are still a week or more off it is going to be tough to do...i get so scared thinking about it. Having constant GERD and getting the surgery and MAYBE one day dealing with barrets and its complications sound like a very acceptable proposition to me compared to what I am afraid of now...

just so frustrating and scary. thanks for all your understanding :)

theacidrefluxman
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Date Joined Oct 2009
Total Posts : 739
   Posted 2/3/2011 10:10 AM (GMT -6)   
i am just trying to think of good reasons that it is not a serious issue. the chest pain has happened twice (once 3 years ago, and once 8 months ago). I had cured it for 6 months in the interim. Both times it came on after taking a strong antibiotic. All I can think is the antibiotic wouldn't cause motility issues, and antibiotics don't cause scleroderma, so it can't be that. then again, i guess the pain may not be caused by my low manometry pressure throughout the esophagus....i dont know.

are manometry tests ever wrong? I forgot to mention, this was my 3rd in 3 years...the past 2 seemed to come back normal. My dr. wants me to get those records, which I am going to try to do.

I always have trouble with the manometry test since its just so uncomfortable...could it be that my swallowing during the test under discomfort isn't reflective of my true swallowing, and that is why it came back as having low pressure throughout?

so stressed, but going to try to keep it off my mind.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 2/3/2011 7:23 PM (GMT -6)   
ARM,
Of course the manometry results can be in error. Even if the low pressure is correct, stop jumping to conclusions! You will make yourself crazy. It's not worth it.

You're on the right track in pushing your doctor for answers. It's so frustrating when their sense of urgency doesn't match ours!

Hang in there and stop worrying needlessly.
Stay in the moment...stay in the NOW! You can handle anything that happens now. There is no way you can handle something in the future that hasn't happened!
It is a worthless waste of time to project all kinds of horrible things that "might" happen. It hasn't happened, and there is no way you can predict what will happen.

Take a deep breath. Keep busy. When your mind starts going there, turn it right around! Once you get the information, you will be able to deal with it. By all means, communicate with your doctor, get whatever tests you need, and follow through on all of it. Just stop worrying.

We're here for you! Vent all you want, and we'll give you whatever support we can.
Take care!
Denise

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 2/4/2011 9:07 AM (GMT -6)   
thanks denise.

Since speaking to my dr. Wednesday and agreeing he was going to order tests to be done, I have called his nurse twice, his secretary twice, and even went into the hospital, but he hasn't requested the tests yet. The nurse said she will remind him, and I am really pushing, but he still hasn't ordered the tests. That makes me mad, because I want to do them asap. I don't know why he would want to wait...

I had past results for manometry and ph sent to his office today, so he will have everything. Ill try my best to heed your advice, but it is tough. I am really scared. I don't open up to people that much in person, just my wife :) but this forum helps me tell others about how scared I am, which to some extent helps I guess. I guess being scared is a justified natural response, since it gets me on top of doctors and getting test results from the past, etc....

:)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/4/2011 6:35 PM (GMT -6)   
Sorry for scaring you. :(
I was just searching for possibilities. I hope the test will help in finding the answers.
Don't pester the nurse too much. She's on your side.
Joy

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 2/4/2011 8:56 PM (GMT -6)   
Hi ARM,
That's what we're here for! You couldn't possible tell other people all your worries...this forum is the perfect place to vent.

Good luck with getting the tests set up quickly.
Try to keep your mind in the positive!
We're here to support you however we can.
Denise

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 2/4/2011 9:39 PM (GMT -6)   
Interesting, the scleroderma; that's what they're going to be checking with me next. My surgeon suspected it and I see some sort of specialist my next trip to Cleveland.
ARM; I think Denise and Joy have given you good advice; Denise and I both had atypical symptoms; my Demeester was relatively normal until all hell broke loose and I could no longer breathe; when they tested again (I think 3 - 5 years had passed..maybe more), my score had jumped to 110...yep, off the chart; so just because it's normal , doesn't mean that it is. I'm glad you're getting the other tests and I'm really interested in the scleroderma.
Janice
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