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mild chronic pancreatitis with normal abdominal MRI?

Posted , 3 users are following.

KristinaW
KristinaW

My general doctor diagnosed me with pancreatitis based on elevated lipase and amylase levels, so I saw a specialist at Cleveland Clinic.  I also found out that my aunt has the genetic form of chronic pancreatitis and higher cancer risk (she has the double risk allele for the gene PRSS1).  I have never drank (can't stand the taste of alcohol, and thank God I can't!), never smoked, went on gluten free and vegetable oil and processed-food free diet for years with no real benefit.  Specialist told me I need to go off the diet because I am dealing with some malnutrition and I need all the nutrients I can get (I lost over 10 pounds in just over a week, I am not 104 lbs, all due to diarrhea, nausea and pain).  However, she does not think I have pancreatitis.  She said it's possible I have mild chronic pancreatitis and ordered lots of testing, but she thinks instead I have fibromyalgia.  As part of the testing I had an abdominal MRI that specifically looked at my pancreas and it came back completely normal-- no stones, no dilation, nothing at all.  I am shocked.  I don't understand.  I keep having normal tests but I keep going downhill and I am scared.  I had a CT scan that showed dilated kidney ducts and while looking at my pancreas on that scan, she said it looks normal and healthy, not shriveled like one with pancreatitis.  So... why do I have all the pancreatic symptoms and why are my amylase and lipase levels elevated?  I have further testing still, but I'm afraid that its going to keep coming back normal, as it has done for years (other than all my vitamin deficiencies and anemia) and I am going to keep going downhill with no help whatsoever.  Anyone else have pancreatitis with normal MRI and normal CT results?  I'm I just some kind of freak?!  Thanks for any and all advice/ help!

0 likes, 4 replies

4 Replies

  • e92425
    e92425 KristinaW

    Posted

    I have had normal ct's and ultra sound just mildly elevated amylase and lipase. Been on a two year journey to figure it out. My main complaint is left side pain and back pain. I also have anemia. My most recent path is auto immune pancreatitis. I have begun the testing and have been told there are strong indicators. I am awaiting final results. They started me on the steroid rayos preliminanrily however I have found no change in how I feel. Afraid it is yet another dead end. I am so sorry you are going through this I know firsthand how awful it is.

    • KristinaW
      KristinaW e92425

      Posted

      Thank you for replying!  Keep me posted, I hope they can figure things out for you and you can get some much needed help!  Have you found anything to help your symptoms, like with diet or home remedies?
    • e92425
      e92425 KristinaW

      Posted

      No unfortunately I have not. Occasionally I take a muscle relaxer and it helps with the pain never eliminates it. The pain has been progressive and went from a mild discomfort to pain. I do follow a very low fat diet and avoid alchocol. It appears my blood results indicate it is not auto immune related I just got them this week so back to the drawing board. Keep me updated should anything develop with you.
  • Lapka
    Lapka KristinaW

    Posted

    I would suggest to find a good Chinese acupuncturist trained in China preferably. They diagnose based on your tongue and pulse.

    i had a lot of tests, ultrasound of abdomen, MRI of abdomen, and nothing explained why I have a high lipase and elevated amylase.

    some acupuncture sessions and moxa helped me.

    Hopefully I helps you. Good luck! Danuta

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