Long standing symptoms and nothing on CT scan: Does it happen often?

There are a number of pathologies of the GI tract that have overlapping symptoms. There can also be one or more co-morbidities complicating a diagnosis. Community hospitals and small primary medical centers do not have the level of expertise found at comprehensive medical centers in major metropolitan areas.

When I had onset of symptoms, It was something I never experienced before. I first went to a PCP…I had two and chose the one in NYC rather than close to home figuring he had a larger and more diverse patient base. Over the course of three days, visits resulting in a sonogram, blood and hematology tests and a physical exam. Not being able to make a conclusive Dx, my PCP escalated the testing and called his medical school colleague a few blocks away at an NCI designated center of excellence with a Hepatobiliary department and high volume pancreas center. A CT with contrast was immediately ordered which imaged a neoplasm. An EUS quickly followed to do a tissue biopsy and an ERCP the following morning. My PCP knew his limitations and didn’t hesitate calling in a Hepatobiliary surgical oncologist who rapidly made the Dx.

When I have something out of the ordinary, I travel to a major center-in my case NYC or Philadelphia where major centers have a higher level of expertise.

Absolutely the same symptoms-- first my primary got me a good ultrasound (I'd already had 2 that showed nothing); this one looked like a gall bladder removal was in order. The surgeon ordered the MRI and when the results were in sent me to a Whipple specialist...who did an endoscopy and inserted stents and still no definitive diagnosis. Then he sent me to a gastroenterologist who when I came out of anesthesia very kindly sitting next to my side told me I had pancreatic cancer; small, but there. Took him 6 go arounds with his camera apparatus to find it. At last I knew. That all took about 3 months and the endoscopies were hard on me--I actually asked to stay in the hospital instead of going home for the stent insertion one. (I'm 84)
I had the worse symptoms for about 2 years after vacations -- always by the ocean, always eating my favorites deep fried anything, always drinking fancy drinks, always stressful plane rides with covid still around-thus the early ultrasounds with no red flags. Funny thing, I had bra strap problems too and quit wearing a bra unless I was going out in public. And tight waistlines (I was not overweight, 120 pounds) but the waist was always too tight and caused me distress. I removed more elastic from pants than I care to remember.
So--to be encouraging--it's over 2 years later; I've had the Whipple, had to quit chemo, had radiation for one mass--now shrinking--and I feel terrific. Just had the 3-month cat scan with no new or old cancers. Good for you in continuing to have MDs look for something; it's not easy to find evidently. I owe a lot to that gastroentrologist for not giving up looking, even though he was behind schedule and it was the end of the dayl. As far as I remember, no doctor ever ordered a cancer antigen test; that would have helped I would think with a diagnosis.
Oh, I also had lots of prayers including a lovely prayer quilt from a non-denominational group--that gave me much encouragement.

I should have sent my comment to you rather than HOPETHEREIS NOTHING.
I didn't pay enough attention to the timing of the postings--and I can't fix it now as I am technologically challenged! Same symptoms, same long time for diagnosis--finally caught on camera by a dedicated gastroenterologist. Hope you can read my posting to HOPETHEREIS NOTHING.

I'm checking in @kag734. How are you doing?

I think I am a bit late to reply as I had some technical issues with the website. Nothing more since May 2023, after EUS excluded pancreatic pathology and all other lab tests came back normal, I quit having more medical tests and started to focus on my life, and started to believe that my symptoms were caused by a functional GI disorder. Tried diet change without much success. Intermittent fasting and regular exercise helped my symptoms to some extent. Currently I am still having the same symptoms but not worrying about them anymore.

Hi there. I don't know whether this will help or not, but a lot of your symptoms sounds like Celiac. I had my gallbladder removed and a couple of years later started having the same issues. For years. They finally did a blood test and endoscopy and found I have Celiac. One way to test it yourself, quit eating wheat products. It's a autoimmune disease, when you ingest wheat the body literally turns on itself. Causing abdominal pain, nausea, back pain, and upset stomach to name a few. Unfortunately Celiac can cause other problems. One being chronic pancreatitis. Which I also have. Again all the symptoms you describe. Have a ERCP done.

Thanks for your reply. I have already been tested for celiac and it came back negative. Also cutting wheat from my diet didn't improve my symptoms. I think now that I have SIBO but the test is not available where I live so can't confirm this diagnosis.

At least you have ruled out that much. I'm sorry you are going through all that you are. The unknown is scary, especially when doctor after doctor can't put a finger on what is wrong. I go tomorrow to an Advanced Gastroenterologist, they know I have something going on with my liver, because my enzymes keep going through the roof off and on. But no one knows why. I hope you find some answers my friend.