tests normal but still experiencing problems

  • Thread starter Thread starter Kassie29
  • Start date Start date
K

Kassie29

Guest
I just returned from my GI doctor this morning and finally have all the results of my tests. Manometry -- normal. 24 pH text -- normal. Endoscopy, with two biopsies -- a little bit of gastritis but "nothing to worry about", in other worRAB -- normal. Chest x-ray -- normal. Ultrasound of neck/thyroid-- normal.
Why then do I still have problems?? especially sore, irritated throat, hoarseness, pain in back between shoulder blades. This has been going on for months and months. The doctor suggested I go off the Nexium, as "there is no evidence that you have an acid problem."
He suggested a low level anti-depressant to help me sleep and ease pain. I told him I have no trouble sleeping and am not depressed. The ENT that I saw back in March said to try Nexium 20 mg twice a day. It did not really help much so that's why I went to GI doctor. Now I wonder what to do. Has anyone else had their tests come back normal, but still experience daily problems? Are you still taking meRAB/treatment?
Kassie
 
The only other test I have had that you didn't mention was a Modified Barium Swallow and Esophagram. It would show if you have anything coming back up when you swallow or if you have any "swallowing disorder" that you might not be aware of. I was surprised by my results. It was actually a Pulmonologist who ordered this test for me. I had the results sent to my ENT and GI doc also though. (By the way, my Endoscopy was normal, I just had a second 24 hr pH that I finished today and will get the results next week. Came back positive 3 years ago though.)

I don't have experience with this, but from what I have read, bile reflux doesn't show up on the 24hr pH tests. It is different from acid reflux although many people have both. You might try researching it--or others on this board might know more.

Have you tried any other PPI's than Nexium. Nexium was horrible for me. My personal favorite was Prevacid until it stopped working after 3 years.
 
It is frustrating, as I'm sure you can all relate. I'm glad my tests didn't show anything serious, but how can everything be "normal" and I still feel these symptoms daily?? My ENT said to take 20 mg Nexium ("the best medicine", according to him) twice a day. My GI doctor said there is no evidence of reflux so there is no point in taking the medication, as it hasn't really helped the symptoms I have now, and there are side effects to the meRAB. I'm not sure what to do. The last few days I haven't been taking anything and I don't feel worse or better than before. I may set up another appointment with the ENT, whom I last saw in March. Maybe he'll be able to see something more this time. I am also waiting for an appointment with an allergy clinic at the hospital. I can't imagine the LPR type symptoms are all from an allergy, but I'm willing to go and see. Charberry, what you said might be the case -- that I don't have a lot of acid but what there is goes so high that my throat and voice are constantly irritated. My 24 hour pH probe showed I had acid 2.5% of the 24 period and only when it is over 5% is it even considered a potential acid problem. And I made sure to eat a chocolate bar and drink apple juice and eat ice cream that day!
Kassie
 
Your case is exactly like mine.
I have had 3 endoscopies 1 colonoscopy, capsule endoscopy, and manometry & 24hr PH test done, with 2 GIs.
The first GI found gastritis and erosive duodenitis, but the biopsies did not confirm gastritis, and he was baffled by it, and said 40mg nexium and carafate should do the trick, I was still suffering so changed GI, this one did all the tests mentioned above and said nothing is wrong, you reflux during night and in the morning but it is still within normal limits. But in the meanwhile the throat was really playing up, and I was also experiencing stomach issues, went to see an ENT, who immediately diagnosed LPR, and said that the fact that I have stomach issues confirms LPR. He said unfortunately it is very difficult to find a GI who will take LPR seriously, and he increased nexium to 2x40mg a day, I was better for a little while but the symptoms came back with a vengence, GI is not doing much, so I went back to the ENT.
My ENT strongly believes that I am refluxing and that is why my larynx and throat are suffering, he said just normal Ph-metry test is not enough since other fluiRAB, and stuff that we reflux can also damage the thraot, and they cannot be picked up by normal acid PH-metry test, you need to have an impedance manometry test, which also measures fluid and other stuff being refluxed and also has multiple probles whic measures it in different locations.
He said I shouldn't stay on nexium for too long, so he is reffering me to a GI who is working closely with him, and understanRAB and believes that LPR is related to digestive problems.
We all know our bodies better than the doctors and you know your symptoms, if you are not happy with your diagnosis, get a doctor who understanRAB, because I certainly don't want to stay on these meRAB for the rest of my life, and will do whatever to get answers.
I guess the key is to find someone who will sympathise.

Good luck
 
When I first had symptoms, I had severe heartburn, burping, painful swallowing etc. I was put on omeprazole (Losec). It did nothing for me. Then was switched to Nexium and it did take away the heartburn, burping, painful swallowing. But I have been left with this sore, irritated throat, hoarseness etc. -- more LPR symptoms, I guess.
I was told manometry is the test to see if your swallowing is normal, and also checks the function of your lower esophageal and upper esophageal sphinters. Mine apparently were normal.
What did your modified barium swallow and esophagram show that your other tests didn't? I might ask my doctor about this when I have a last follow-up appointment in 6 months.
I feel like my GI doctor has kind of written me off -- he said "I've done all the gold standard tests and there is no evidence of reflux." "Maybe you should go back to your ENT". I feel I'm being shuffled between doctors. When I persisted about my symptoms, the GI doctor suggested setting up an appointment with an allergist and his office is going to call me with further details. Has this been suggested to you as well? I feel I'm just going 'round in circles.
I forgot to mention that I did also have an ultrasound of the abdomen -- liver, gallbladder etc. and this also was, you guessed it, normal.
Kassie
 
I agree with you whole heartedly! Most doctors don't take LPR serious and think by taking a little purple pill, you will be ok. That is not the case. I think those medicines may help some (mainly with GERD) but not LPR. They did not help me and why take chances with side effects? I also agree that LPR definately has some relation to stomach problems. I started out 4 years ago with IBS (irritible bowel) and then the constipation in the last several years. But helping digest food does seem to help a lot with the LPR. It is very very frustrating when you feel like your Doctor really has no clue what your going through and I think they just want to treat the symptoms and not get to the real problems. I would be really curious to hear about any allergy testing results too! Keep me posted.
 
I know how frustrated you must feel because that's how I've been feeling for years. In the beginning I was diagnosed with GERD, Gastritis, and Bacteria H. I do think meRAB helped my stomach, which by the way never hurt that much and I didn't have heartburn. Felt like I was dying though and lost 50 lbs. My symptoms have always been more upper resp type. After 8 weeks or whatever that magic nuraber that we all supposed to be well, I was taken off some of the meRAB. Well, guess what....I remained hoarse, not able to breath, sinus problems and feeling bad. Have had countless scopes since I was seeing countless Dr's. My test showed mild reflux and later my scope showed no inflammation. I do not have a hernia. I too was shuffled from gastro to ENT to Allergy/Asthma Spec, Lung Spec and back again. I kept being told I showed mild reflux and it was not the reason I was having all other symtoms. What I finally was told was that any minute amt of acid that gets above the upper sphinter or into the lungs can cause great havoc. He said it wasn't the amt of acid but where it was going that was my problem. I've been on every med there is, taking allergy shots for years, still seeing Dr. after Dr., which finally I was told it was LPR. (10 yrs ago many gastro's disagree that acid can go that high). The thing with the test is that I can be one way one day and another the next! I continue to suffer symptoms daily and my Dr's do not encourage surgery, which by now, I would be more than willing to have done. Anything to get my life back. I think that you will get much better but you must remeraber that this is a chronic disease and won't go away forever. What does your ENT say? I've found for LPR that they are much better informed than gastro's.

CharBerry
 
It's also so frustrating when the ENT tells you to go to the GI and then GI says to go back to the ENT! The ENT says the symptoms are coming from the stomach and the GI says the stomach is fine. They can't even agree on whether I should be on meRAB or not. I'm thinking of trying digestive enzymes or the dgl licorice from the health food store and see if that helps at all. I have not had a gastric emptying test so I will be requesting that on my next appointment with the GI. But he wants me to see the allergist first so I guess I'll have to go that route.
I think I have LPR reflux and I specifically asked my GI doctor if the manometry test also tested the strength of the upper esophageal sphincter and he said yes, yours was fine. Aaargh.
Kassie
 
I have not had as many tests as you, but I've seen two ENT Dr.'s that told me I have LPR reflux and basically deal with it and take Nexium. It's not until I went to a wholistic nutritionist that does Reflexology that I got some relief. My symptoms were mainly the scratchy throat and always feeling this drainage stuff in my throat. But basically I found that I was not digesting my food. I have since started taking stomach enzymes and had great relief! I quit taking Nexium because it was not helping at all. I also use a sinus rinse daily that seems to help also. I have also had an upper G.I. test done and the results came back normal on that as well as a scope test done that was normal. I see my regular Dr. next week and I think she may refer me to a G.I. Dr. Not sure I want to even go because it doesn't seem like I'll get any results from it. I feel better when I'm eating less and more healthy and also exercising. I still think my problems stem from my digestion of food, or lack of digestion I mean. I am also thinking of having some allergy testing done. Have you had that done?
 
I have been lucky in the fact that both ENT Dr.'s and my regular Dr. all say I have LPR. But they all say take Nexium and deal with it. I see my regular Dr. next week again and I think she is going to refer me to a G.I. Dr.-not sure if it's worth my time. I do agree that taking the stomach enzymes may give you some relief. Keep me posted on the allergy testing, as I may try that road next!
 
Back
Top