Undiagnosed for 3 years
Hello All… I am 35 years old and I suffer from chronic intermittent abdominal pain. I have seen over 20 doctors in 3 different states and have had the diagnosis of IBS, however, part of me can't help wonder if it is my pancreas that is evading diagnosis. This has been happening for 3 years now. I have had several hospital visits for pain, a gallbladder removal, several CT scans, liver biopsy, pancreatic function test, several ultrasounds, fecal fat tests, and all these tests have come back normal, my lipase or amalayse levels have never been elevated. I did have an EUS done on my pancreas, which showed 4 out of the 9 criteria for chronic pancreatitis. I then took those findings to a highly regarded pancreas specialist in Boston who had performed my pancreatic function test. He said based on the pancreatic function test coming back normal and only having 4 out of the 9 criteria for chronic pancreatitis, that he did not think it is my pancreas. My pain is typically situated in my left side below and under my rib cage. The pain tends to be intermittent, but I do get orange loose stools with it. I typically get mouth ulcers on and off and I get so tired during flare ups. Just seeing if anyone has any input/feedback as I feel I received the diagnosis of IBS because nothing else is showing up. Thank you.
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Thanks for responding.
@nicoleny Just to reinforce. All Amyloidosis is progressive and, eventually, fatal. It may not reach the fatal level until age 90 or 140. But eventually it will take you if nothing else does. It just depends on how it starts and the pattern it holds, and how you block it. The enlarged liver means only that you should 1) have a liver biopsy, and do it again in another year, and 2) have the sFLC every year, and if it shows above the reference range for Kappa OR Lambda OR both, do the serious testing as soon as possible as noted in my paper or named by Mayo or other 1-AAA Clinic.