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I was diagnosed with chronic pancreatitis approximately three years ago, mainly based on slightly elevated lipase levels (usually appr 50-75, with the normal range at this particular lab being 15-48), as well as an intermittent slight tingly, prickly feeling in my upper left back. I also had a couple of episodes of what I now believe were acute pancreatitis (one about eight or nine years ago, then again two or three years ago), horrendous pain directly in the middle of my upper abdomen that did not respond in any way to the antacids that I gobbled at the time, knowing nothing of pancreatitis and just believing it was something stomach-related. I was not instructed to do anything different, i.e., diet, etc., upon diagnosis of cp. Admittedly, I was terrified at the time (and still am) of pancreatic cancer, and had no idea of the terrible nature of chronic pancreatitis, and considering that I did not have any daily/constant pain at the time, I did not go out of my way to find out what measures to take to try to protect myself against the progression of cp. Indeed, I had no idea cp was an incurable progressive disease.
Also, every imaging test I've had shows no sign of cp, only the lipase levels. I've had two CT scans, an EUS, an MRI, and various ultrasounds.
Over the last three years, the pain/discomfort/ symptoms have gradually escalated to the point where about a month and a half ago, things seemed to sort of turn a corner for the worse. I've had pain, burning, discomfort every day -- upper middle-to-left ab, as well as mid- to upper left back. Also, front shoulder ache, both shoulders, sometimes simultaneously, sometimes individually, in the soft area below collarbone.
And off and on for six months or so I've had a burning feeling in my mouth, in my tongue. It's gotten more regular over the last month and a half.
I started taking vitamin c and grapeseed a few weeks ago, though with no noticeable effect.
Anyway, I'm trying to find out if anyone else has this burning tongue/mouth. It seems to be directly correlated to the burning in my abdomen and back, but I can't find anything about it on the internet.
One other thing -- can anyone tell me if they've had their CA 19-9 tested, and if it has gone up? I had it tested first in May 2015 and the level was 16 (anything under 34 is normal), then tested again in April 2016 and it was up to 23, then tested again on December 2, 2016, and it was up to 25. My gastroenterologist basically waved it off as okay because it was still under the 34, and he tried to say that it was normal to 'fluctuate'. The thing is, to me, 'fluctuating' implies going up and down, whereas mine has only gone up. In the three times I've had it tested in the last year and a half, it has gone up nine points.
Sorry for the extremely long post. It's my first time posting on any site re: pancreatitis.
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