Undiagnosable heartburn symptoms (but isnt GERD)!!

[gdmk11112]

I'm looking to see if anyone has any insight or experience with an issue I've been dealing with for over a year. I'm experiencing a burning in my chest that is 24/7. I've done every invasive GI test - a few endos, stomach emptying, bravo, manometry, CTs, MRI, etc) - and everything as ruled out acid reflux and everything is normal. Initially I automatically assumed it was GERD because I had an issue 6 years ago and have been on PPIs since (this was before they discovered that you SHOULDNT be on them that long). I tried changing up the medication, altered my diet to follow the GERD rules and some elimination diets, got tested for celiacs, have a binder full of every blood test known to man, tried acupuncture for months on end, and now we're on to pain management since all my docs seem to be at a loss. I'm trying amatryptilene along with neurontin and I'm still stuck here. If anyone has any insight , advice or any experience with this it would so very appreciated. I'm at my wits end and dont know where to turn next.

[silverfox67]

       My, my... how awful!  Fibromyalgia can have some complications such as IBS which causes diarrhea and or constipation - but not anything in the throat or esophagus.
     Did they check you for Lupus?  Lupus has so many diverse symptoms.  Might want to look it up.
      The pocket in  the throat is not something that a gastroenterologist or ENT would normally look for.  
      Btw,  do you have amalgam (silver) fillings?  They leak mercury into your body slowly poisoning one.
I have one left which I need to change out soon.  Also a dentist did a root canal and a crown but put a metal post in there which has been bothering me from day one!  That's coming out this Friday!  It has caused me headaches, earaches, flu-like symptoms, stomach aches and lots of saliva as my body tries to throw it out.  That molar keeps rising to the top and I push it back down as it makes my jaw (TMJ) hurt.  
The only thing the dentist wants to do is "adjust" it by grinding off part of the molar above it that "hits" it.
     Just something you should think about.  Here you have been through 7734 and back trying everything and no one seems to know what causes your problem.   Perhaps it's your teeth!  If you have silver fillings, you have mercury poisoning!
      Please let me know what you find out.  This is truly baffling and you are suffering enough!  

[gdmk11112]

Thank you all for the replies,

I've had a year and half's worth of testing, biopsies and saw all sorts of doctors from GIs, to ENTs, to neuorolgists, to rheumetogolists, to cardio docs.

Silverfox, I had multiple endoscopies and and ENT version of it when they go through your nose, but no one saw anything strange until just recently where a GI saw a small hiatal hernia but didnt think that was the root of my issues since it wasn't acid causing the pain. Is that pocket something obvious they would see in doing these routine tests or is it something they'd need to know they were looking from the start?

As for scleroderma - autoimmune got brought up a bit last year, but everyone has done a barrage of bloodwork on me and nothing has come up. At one point fibromyalgia was mentioned.

[silverfox67]

     This is indeed strange - you have symptoms of heartburn but it isn't heartburn.  Hmmmm.  Could it be an esophageal spasm?  Do you have trouble swallowing?  If so, Dicyclomine (for IBS) could work for you.

     Did the Ear,Nose and Throat doctor check you for a pocket or pouch in your esophagus?  That would cause similar symptoms.   Some people have a condition that causes the esophagus to spasm or close and they need to have it stretched from time to time.

    A friend of mine had Scleroderma and had to have her throat stretched.    Not saying you have that... but would be best to see a specialist.

          Wishing you the best prognosis!

[silverfox67]

     When you have your next round of labs (blood work) done, ask the doctor to check your iron levels.  Some people have high iron and it can cause heartburn, GERD and Reflux.

       It also causes pain in the stomach on the right side.

Hope this information was helpful... Best wishes

[HeartburnSymptomsCured]

I think it's important to see your health professional for your symptoms of gerd. Only he or she can properly diagnose the problem correctly.

[kevieb]

I assume you had biopsies done?

[selmaS]

  Hi and welcome to the GERD forum.

Have ur Drs tried to replace minerals that get depleted from taking the PPI's? Those meds will deplete magnesium and will affect ur bowel....and I would also suggest u ask ur Drs about a probiotic which helps restore the natural balance in the digestive track.

Taking PPI's when u do not have high acid levels can also cause an issue as u have too little acid and that will make u have similar symptoms as too much acid.

  Continue with ur healthy diet, exercise...and talk to ur Dr about these suggestions...as I am not a Dr, but only ur Dr can suggest what dose is good for u and which of the suggestions may work.

Good luck