How can I get a diagnosis?

[wisern]

I had two sisters with chronic pancreatitis caused by pancreatic divisum. One sister died with cirrhosis of the liver. The other sister now has cirrhosis. I have had abdominal pain in my left upper quadrant for twenty years now. The pain is very similar to that of my sisters. The pain is accompanied by nausea and the pain radiates to my back. I feel that this is from my pancreas, but my amylase and lipase levels are never elevated so I can not get doctors to perform any other tests to check for pancreatitis. My sister that died from cirrhosis never had elevated pancreatic enzyme levels either yet part of her pancreas was necrotic. In addition to the pain, my stool is always orange, green, or yellow. It is thin and ribbon like and short and looks like it is full of holes like a sponge. My sister's bowel movements looked just like this. In the last month, the pain has spread to the right side. I had a CT scan which revealed abnormalities in my liver. I had a triphasic CT scan after this which showed that my liver is enlarged over 18% with diffuse fatty infiltration and my portal vein is enlarged. It could not be determined whether the portal vein abnormality represented an arteriovenous malformation or an aneurysm. Yet my doctors seemed to think that I did not need to worry about the results of the CT scan. I am having as much pain in my liver as I am in my pancreas and think that I may be developing cirrhosis. No one has even considered doing a biopsy of my liver. I cannot handle any fat when I eat and am in pain as soon as I eat. The pain doubles in intensity 1-2 hours after I eat and I can feel something in my periumbilical area that feels like it is whipping back anf forth rapidly. This is accompanied by a burning pain that radiates up my back and into my chest. I have lost ten pounds in the last month. How do I get my doctors to focus on my pancreas as the source of the problem and what tests should I have done?

[wisern]

Thank you for your response. The doctor who worked with my sisters has retired. We do not have any records. The hospital that they were in for their attacks has shut down. I do not know how to get their records.

[CalGal]

Wisem, have you taken your sister's written doc's reports to your doctor and put them on the desk in front of him/her? You may have to do more than just tell your doc about your family history. It can be extremely difficult at times to get docs to sit up and take notice. Have you ever just asked them out-right about why they're not looking at your pancreas; about why they don't seem to be worried?