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Has anyone ever been misdiagnosed with GERD?

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GERD & Acid Reflux
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Posted 1/31/2006 6:03 PM (GMT 0)
I don't feel like I even had GERD or reflux to begin with.
The whole thing started because I always had pleghm going from my nose to my throat.
So I went to the ear/nose/throat doctor and he said I probably had LPR or GERD causing the pleghm. So he put me on a PPI, so I just listened to him and took it. No change in getting rid of the phleghm and I was running out of the medicine anyways and wanted to quit taking it. I had researched LPR/GERD and none of applied to me. No heartburn, no acid taste or regugitation had ever happened before. My problem was coming from my nose producing to much mucous.
But since I had been on the PPI for nearly 2 months, it was already really hard to quit taking. I started to feel sick to my stomach & naseous but figured oh it was just a side affect, but by the end of the weekend I felt even more sick, my stomach just churned & burned, almost like it needed the stuff back. It was so horrible I was in the ER 3 times within a week to try & find out if something else was going on...
They had to give me GI juice to calm my stomach down it was going crazy.
So I went back on the PPI's just to get rid of that sick naseous feeling.
Then I went to a GI doctor who ran every torcherous test on me, and came up with absoultetly nothing to prove I had acid reflux. (which I already figured out) but they kept trying to guess other stuff that might be going on and wanted me to keep taking the PPI's.
What no one was understanding is that I had NO symptoms before starting PPI's and afterwards I have had nothing but problems...
my stomach still acts up while on this medicine, last year I got so sick, had headaches, lost a lot of weight and I wasn't even overweight, now I'm skin/bones. ugh
I feel like I'm not getting the nutrients from food that I need and agree with others that how can it be healthy for you to be on PPI's for a long period of time when it suppresses your stomach acid that you need to digest foods properly & give your body the nutrients you need?
but if I don't take it my stomach will feel nauteous? Any time I ever tried to stop taking a PPI, I would just get sick...
I've been taking them for a year & a half, and I'm going to try to get off again, but am very scared about feeling sick again...

Danielle
Posted 1/31/2006 6:26 PM (GMT 0)
That's an awful story, Danielle.  Sorry you've had to go through it.  It sounds to me like you should get a second opinion from another ENT doctor.  Could be sinusitis?  If going off of the PPI's makes you sick, you may want to "step down" more gradually.  By this I mean lower your dosage of the PPI and then move down to an H2 blocker like Pepcid or Tagament.  Then try not taking anything.  Did the torturous tests include an upper GI series/barium swallow?  This is the best test to determine if you are having reflux.   You may also want to consult with an osteopathic doctor and/or naturopath, whose goal it is to use natural alternatives to combat your symptoms.  There are other conditions -- such as achylasia (sp?) that can mimic heartburn.  This is a motility problem involving the esophagus.  However, it sounds as if your primary issue concerned the ENT system.  Let us know what happens. 

Laura

Posted 1/31/2006 11:12 PM (GMT 0)

I hope you have read some of my recent posts on here?  When you quit PPI's, you can get acid rebound.  The last poster is right in that you need to taper off very slowly and try taking something like pepcid, zantac or tagament or even gaviscon for  a while and then taper off of that too.

You wouldn't believe the problems I am having right now with my stomach because of these stupid, stupid PPI's.  In my opinion, they are God Awful!!!

Nancy

Posted 2/1/2006 7:43 PM (GMT 0)
Hi Danielle,
Sorry for all that you've had to go through. Don't you find it amazing (and obscene), how one doctor can pin a bad label on you, and then everyone after him/her keeps following down the same wrong road! No wonder our health care costs are out of sight!! None of these docs seem to have any common sense any more.
When I make too much acid, I get very nauseous alot. It took me a long time to figure that out. Even when I don't have heartburn, but have alot of nausea, I realize that it's my GERD flaring up. I think our stomach acid is very tough on the rest of our GI tract too, and can cause bloating, cramping, diarrhea, etc. I agree with Laura that you need to lower your dose slowly and just expect a little rebound. I used to get so frightened of rebound symptoms, (for various meds), that I would quickly get back on a drug......only to have to face the music later again.

about the phelgm in you throat.....I began having that awhile back too, and think my mucous is just too thick.......so I try to drink lots of water, and just accept that it will get thicker as I age (you may be young though). Also, it's alot worse for me in winter, and using a humidifier definitely helps. You also might want to occasionally try some guaifenesin, which can loosen your secretions...........but I would try the most natural solutions first.
I swear.....I think doctors have gotten so many of us into trouble, just because they don't take the time to think of the whole body, and to think things through. Maybe it's just a function of our modern society, but all they do is prescribe meds and tests. They seem to have nothing else to offer us. I think that's why naturopathic, holistic, alternative medicines have become alot more in favor.
Just keep in mind as you try to get off the PPI, that it might not be easy, and it might take a few weeks, and you might just have to endure some reflux and nausea....but try to get through it. I did, and I'm soooo glad I did!
Also.....if you've gotten so much mucous, you might be swallowing alot of it, and that can really upset your stomach!
Posted 2/4/2006 3:02 AM (GMT 0)
Well so far I have been off the PPI since Tuesday. (have sometimes taken the H2)

Within the first 4 hours of not taking it my stomach was acting up, then I was ok. Was very tempted to just go take one, but didn't.
THen I was ok the rest of that afternoon/evening, then the next day was ok up until at nevening my stomach started acting nauteous. The next day alrigh except for when I had not eaten between lunch & supper my stomach didn't like that, but I had waited forever at the DMV and then was stuck at Walmart waiting for over an hr for them to change the oil in the car, so I was HUNGRY, another thing an already bad stomach doesn't like.
Today been ok, tonight a little burning feeling in my stomach, but I'm going to keep trying. If it gets too bad of course I'll have to go back on..ugh

Danielle
Posted 2/9/2006 4:49 AM (GMT 0)
WOW...this has been one of the most helpful strings...I have been so confused for the past 6 weeks. It has to do with Nausea, Nexium & GERD. I went to this Gastro guy with nausea & this mysterious pain/ache in my upper back around my shoulderblade, btw, I've had NO feeling of GERD throughout this whole ordeal. He actually seemed confused and had me to a chest x-ray, which of course was fine...and gave me some Nexium. So I thought, ok, I'll try the purple pill, so I promptley started taken them. After about a week, my nausea went away so I thought COOL that was easy and I stopped taking Nexium. And then BOOM, here comes the nausea back, then I seemed to tail spin, so I would take the nexuim for a day or two and the nausea would not budge so I thought ok, it;s not the nexium so I stopped again, on again and off again. BLAH! So I then went to a reg. Doc with the same symptoms and he ordered bloodwork & an ultrasound and again all came back fine. So now he wants me to do the test where they stick the tube down my throat. I'm now back on the Nexium, still suffering with the nausea, and it's horrible. Im still having the odd ache near my right shoulder but can't seem to connetc it with anything.

So A...can GERD cause this kind of persistant nausea? and B. could me trying to get off Nexium cause even more nausea?

Thanks all!
Posted 2/9/2006 1:17 PM (GMT 0)
That's such a sad story! I'm amazed that doctor associated your phlegm with GERD. I would have thought he would have given you decongestants or antibiotics. I'm so sorry you are going through this now.

My dad was never diagnosed with GERD, but when he was in the hospital for brain surgery last year, we discovered that among the other medicines they were giving him, was Protonix. At the time, I was on that myself and was shocked. He didn't have any problems with his stomach. They kept him on that for a few months and never told him to go off. When he went to his regular doctor, he finally asked him if he could stop. He has and thankfully, he never got rebound. Talk about unnecessary prescriptions!

I don't have any good recommendations for coming off of the PPIs (I'm trying to do this myself) other than be careful what and how much you're eating.

As for the phlegm, I have chronic sinus problems too. I looked into alternative ways to treat my sinuses because sinus medicine made me nauseous and didn't help that much. I started using a Neti Pot. Have you ever heard of that? It's basically irrigating your sinuses with saline. You can do a Google search on it. It's amazing how it helped me! I feel like it's a miracle treatment. Now I just need to find the same thing for GERD :-)

Hope you feel better soon!

~Niki
Posted 2/9/2006 11:48 PM (GMT 0)
UPDATE:
Ok, it has been a week & a half since I have taken anything, and I'm doing great.
At first it was a little rough because my stomach was not used to not having the protection of the PPI. But I think it's use to it now. I hope it continues to do good, so I don't have to go back on anything. Just in case, I do have some Prilosec OTC on hand, and if not I can always return it to Walmart :)

Also, to "thedwp"
ask your doctor or do some research on the net on costochondritits, that is one of things I just developed over the last 2 months, it started in my chest/breastbone, but the pain can shoot all over including my upper chest/armpit/back...that is what I had and the one doctor wanted to say it was GERD, I told him impossible because I had been on a PPI for a year & half because of my stomach problems, so there is no way it was GERD, I have no heartBURN...

Also about your nausea, mine was unexplained, but maybe it could be gastritis, gastroparesis, or IBS are other things to check for, I think too often doctors just want to say you have GERD...

Danielle
Posted 2/10/2006 3:26 AM (GMT 0)
Thanks for the ideas. I'm just trying to decide should I stay on the nexium or stop all together...my gut tells me to stay with it and give it time to try and "fix" whatever this is, but again, I feel no symptoms of GERD ecxept for the nausea. My doc put me on Zoloft, I took it for 2 days and thought I was going LOOSE MY MIND!!! No more of that for me.

So anyway, my fear of staying on the nexium is getting off of it...I don't ever want to go theought this persistant nasuea again.

thanks guys.
Posted 2/10/2006 3:42 AM (GMT 0)
OMG! They put me on Zoloft too! When I was so sick & weak because of the nausea & not feeling good, I was starting to feel depressed, so they gave me that.
It felt like it was messing with my mind, after only taking it for 3 days, I couldn't sleep all night for 3 nights, I stopped taking it.
It might work for some, but not for me.

I would say take Nexium IF it seems to be helping your problem, or if GERD was your problem, if it's something else maybe the Gastro dr can tell you something different to take.
Nexium gave me headaches though...but I felt it helped my stomach...

Danielle
Posted 2/10/2006 3:43 PM (GMT 0)
I think for me it's turned into a big guessing game...to take to take or to take. Since Im not haveing a "burning" feeling or the typical GERD symptoms who knows. The only real pain I have is occasionally in my back up near my right shoulder blade. The GI guy said my esohpogus (SP??) is all back in there so it could be gerd. My plan right now is to keep taking the purple pill and see if it starts to work.

But one thing for sure NO MORE ZOLOFT. It's finally out of my sytem this am and I feel soooo much better. That was scarey!
Posted 2/11/2006 4:28 AM (GMT 0)
yeah thedwp

           I, too was getting paints from chest through to back,between shoulder blades. My gastro says common symptom of gerd. Have nausea almost continually, unless i take a Motilium tablet 3 times a day and 2 ginger tablets when I get out of bed. Am also on Somac, now, as the Nexium ceased to work. Have been feeling pretty good on these.

          

                      ebonyrae

                

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