I am new to this forum. This seems like a very supportive community.
For the past three years I have been experiencing pain in the upper left part of my abdomen. The pain is close to the center of the abdomen. It is a very deep pain. It is not a muscle or bone pain. It varies from burning, stabbing, gnawing, and dull. Sometimes the pain raidiates to my back and left shoulder. I also feel a lot of pressure in my abdomen.
I also experience nausea and extreme fatigue. I randomly get flares where all my symptoms become very intense. This can be very debilitating.
I have had some CT scans and MRCPs. Here are the reports from them. I am wondering if the findings on the reports are similar to what those with PSC tend to have? I am having trouble getting an answer from my doctor.
Thank you for your help!
Report from CT in October of 2013
Mild diffuse intrahepatic biliary ductal dilatation is noted. No focal hepatic lesion is identified. The gallbladder is mildly distended, but otherwise unremarkable. The common bile duct is not dilated measuring up to 6 mm greatest transverse diameter; however, there is the suggestion of mild CBD wall enhancement with questionable nodularity.
Report from CT in May of 2014
Mild diffuse intrahepatic biliary ductal dilatation is unchanged. The common bile duct measures up to 7 mm in short axis. Previously seen subtle CBD wall enhancement and nodularity are not appreciated on this exam.
Report from MRCP in November of 2014
Mild central intrahepatic ductal dilatation. No dilatation of the common bile duct. No cholelithiasis or choledocholithiasis. Normal signal throughout the pancreas. No dilatation of the main pancreatic duct. Normal appearance of the liver. No gross hepatic mass.
Report from MRCP in June of 2015
Persistent mild dilatation of the central intrahepatic bile ducts is again seen, slightly more prominent on this exam compared to the prior. There are areas of mild narrowing and irregularity of the intrahepatic bile ducts and proximal common hepatic duct. Findings are slightly more pronounced on the 6/2015 exam compared to the 11/2014 exam. No dilatation of the common bile duct. Gallbladder sludge is present.
Report from MRCP in October of 2017
The liver is normal in morphology and signal intensity. No suspicious lesion. The gallbladder is normal. Stable minimal intrahepatic biliary ductal dilatation measuring up to 2-3 mm in the left and right hepatic ducts. Stable focal areas of signal loss in the right hepatic duct and proximal common hepatic duct. The common bile duct is normal in caliber measuring 4 mm. No biliary ductal filling defect, enhancement or mass.
You might have trouble getting an answer from your doctor because the imaging doesn’t look conclusive. What are your liver enzyme levels? Are the elevated? There are other potential causes of the pain you mention, for example an ulcer caused by H Pylori, or colitis.
Tough to say. Mine was diagnosed by an ERCP that did a great job of showing the beaded bile ducts, which made for a straightforward diagnosis. ERCP’s and MRCP’s are the two best ways to diagnose psc.
The pain that you have, is it about halfway between your belly button and sternum? That is where I had the pain and that radiated to my back that brought me to the ER. It started out small, like a hunger pain, and gradually got worse.
Seems like you have some symptoms that pscers have.
I would try to get to a hepatologist, not a GI or primary. Not sure if this is the reason a diagnosis is so hard to discern.
Friend,
I concur with Jeff, ERCP is the best way to diagnose PSC. It is the gold standard for diagnosis even over MRCP. Saying that, those who have small duct PSC the MRCP comes more into play and often requires biopsy, but for classic large duct PSC the ERCP is the best way to diagnose. And as Jeff said make sure this is a specialist taking care of your liver, not a GI or primary. Good luck.
Is there anything specific I should look for in a hepatologist? I live in the Washington DC area. Is anyone aware of a hepatologist or hospital that is good at diagnosing and treating PSC nearby there?
I think it is interesting how it says “when we see intrahepatic bile duct dilatation with strictures and only mild dilatation, the first diagnosis we think of is primary sclerosing cholangitis”.
Medstar General in Washington DC appears to be a state of the art transplant center from what I’m seeing on their site. Here’s a link to their liver specialist page.
Here are a few of their hepatologist that list PSC as one of their specialties, but I’m sure any of them would be a good start.
How about pancrease? Have they checked for pancreatitis or have you ever had that? ERCP is invasive procedure and has risks associated with it. What you described and radiating to back and left shoulder may be seen in pancreatic inflammation??
Does I pain have any correlation to when and what you eat?? Something to observe if you haven’t already. Best wishes on finding the right doc for you!![quote=“fcmmark, post:5, topic:1857”]
Friend
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I was checked for chronic pancreatitis and I was told I do not have it. I thought I had it since my symptoms seemed to fit pancreatitis very well.
They tested me using MRCP with secretin stimulation, endoscopic ultrasound, pancreatic function test, and blood work (amylase and lipase). The endoscopic ultrasound was indeterminate for pancreatitis and everything else was negative for pancreatitis. That it is how it was determined I do not have pancreatitis.
My testing was done at the University of Minnesota. They are very experienced with pancreatitis.