Sorry to hear you're having such a struggle. Actually, your situation sounds eerily like mine. It took over 6 years for a GI doc to even give me the option of going to a surgeon, and that was after countless contacts from my PCP and allergy doc. My PCP finally referred me himself, to a surgeon with whom he had a close relationship. That surgeon put me through tests (endoscopy and barium swallow) and told me I would be a good candidate for surgery--and I'm sure it was largely because he respected my PCP's opinion.
My 24hr PH monitor DeMeester score was 4, and yet my lungs were in horrible shape, and my asthma uncontrollable. My GI doc said that my lung problems were definitely not related to my reflux. My PCP disagreed, and found it extremely frustrating.
After my PCP referred me to his own surgeon, I went back to my GI doc, armed with the information from the tests and the surgeon's comments. At that point my GI doc gave me another PH monitor and my score was borderline high...a DeMeester score of 14+. Finally, with a bit higher score, but mostly because of my PCP's perseverance, the GI doc said, I could either continue with medication, or he could refer me to the surgeon he recommends. Of course I opted for the surgeon. My lungs were a wreck and I'd been on top dose PPI and Ranitidine at bedtime. It wasn't doing any good!
The surgeon was a bit concerned about my low DeMeester score but was willing to do the surgery on the recommendation of my other doctors. Post surgery, my lungs took two and a half months to clear up, and since then they've been great.
I understand what you're going through. Don't give up. There is somebody out there who will listen and believe. It is a struggle, I know, but somehow, somewhere, you'll find the right doc, and you'll get the testing when you're symptomatic. Just hang in there!
Wish I could do something to help!
Words of wisdom by Eckhart Tolle:
"Whatever you fight, you strengthen, and what you resist, persists.”
“Worry pretends to be necessary but serves no useful purpose”
“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”