Discussions By Condition: I cannot get a diagnosis.

I can't get a diagnosis, please help

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: maecharl
  • March 13, 2007
  • 02:48 AM

Ok, here goes; I am a 41yr old female mother of 2. I have had a fever on and off for the past 2 years along with just not feeling well, tired and some weird feeling in the upper right quadrant of my abdomen, almost like there is something under there, and ther is pain, sharp pain at times. The fever is now daily and so is the pain its take my breath away sharp, and uncomfortable feeling in the urq of my abdomen. Went to MD, did alot of tests; CAT chest, and abdomen, ultra sound of upper and lower abdomen. Found dilated common bile duct on ultra sound and minute spots in all 4 parts of my lungs. Had ERCP and my common bile duct is 1.6cm, and the pancreatic duct is also abnormally dilated. (Had cholecysectomy in 2000,and Hx of common bile duct blockage in 1990 with very high liver enzymes but no jaundice, white stools and dark urine.)
Positive Epstein Barh, elevated liver enzymes and they continue to rise, and an elevated ACE, my WBC slightly elevated. I am now taking pain medication and tylenol every 4-6 hours for the pain and fever, its the only way I can function daily. The doctors want to do a liver biopsy next, any ideas of what has been making my life pure ***l for the last two years?

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7 Replies:

  • The liver biopsy sounds like an excellent next step. They aren't easy, but in your case, sounds worth it.Have you been tested for hepatitis? Have they checked your gall bladder? You say "doctors" but exactly what specialists are you seeing? Sounds scary. I'm 43 with 2 kids. I can imagine.Write back...Shula
    Anonymous 42789 Replies Flag this Response
  • Thank you for your response. I had my gallbladder removed in 2000. I am seeing a hematologist/oncologist and a gastroenterologist. I have had negative results for all hepatitis viruses. How difficult is the liver biopsy; have you had one yourself? Will I have to stay in the hospital afterwards? Do you have any ideas as to what this could be?
    maecharl 3 Replies Flag this Response
  • Here's a link describing the procedure:http://digestive.niddk.nih.gov/ddiseases/pubs/liverbiopsy/index.htmIt is done outpatient, but in a surgical room. You have to lay there a while afterwards, but then you can go home (and someone has to be there to drive you.)I hope this helps,Shula
    Anonymous 42789 Replies Flag this Response
  • Sounds similar to Autoimmune hepatitis...I have it..It took forever to diagnose. Do a look-up on it, they probably only checked you for viral hepatitis. With a flare-up, I get a fever, high WBC's and an elevated IGg (autoimmune response) I didn't have viral hepatitis but after allot of blood work and a liver biopsy I was finally diagnosed after 30 years. I felt like crap too..all I ever wanted to do was sleep..ask your GI doctor to check the proper bloodwork for AIH..if he doesn't know what your talking about (like many GIs missed on me) go to a GI doc who specializes in liver disorders...I know you feel better taking Tylenol but be careful....it can cause more liver problems...contact me if you'd like to correspond. I was also positive for Epstein Barr (which may bring on AIH if your genetically predisposed to having it) and I also have had my gall bladder out (all before the age of 16) I am now 37. Good luck!
    rhondamza 3 Replies Flag this Response
  • I have a liver biopsy scheduled for Tuesday 3/21. I am wondering what types of diagnosis they can get with the liver biopsy? Thanks
    maecharl 3 Replies Flag this Response
  • Ok, here goes; I am a 41yr old female mother of 2. I have had a fever on and off for the past 2 years along with just not feeling well, tired and some weird feeling in the upper right quadrant of my abdomen, almost like there is something under there, and there is pain, sharp pain at times. The fever is now daily and so is the pain its take my breath away sharp, and uncomfortable feeling in the upper right quadrant of my abdomen. Went to MD, did alot of tests; CAT chest, and abdomen, ultra sound of upper and lower abdomen. Found dilated common bile duct on ultra sound and minute spots in all 4 parts of my lungs. Had ERCP and my common bile duct is 1.6cm, and the pancreatic duct is also abnormally dilated. (Had cholecysectomy in 2000,and Hx of common bile duct blockage in 1990 with very high liver enzymes but no jaundice, white stools and dark urine.)Positive Epstein Barh, elevated liver enzymes and they continue to rise, and an elevated ACE, my WBC slightly elevated. I am now taking pain medication and tylenol every 4-6 hours for the pain and fever, its the only way I can function daily. The doctors want to did a liver biopsy last week, and it was negative for any abnormalities. My hematologists thinks I could have sarcoidosis in my liver, which wouldn't show up in the biopsy unless a granuloma was in the actual tissue removed from the biopsy. Does anyone know how they can diagnose sarcoidosis in the liver? I have also had a 50 pound weight gain in the past two years. I do have little red dots on both my hands and forearms. Any ideas of what has been making my life pure ***l for the last two years?
    maecharl 3 Replies Flag this Response
  • Weight gain can be the thyroid gland. I would look in to Lyme and co infections, undx'd and treated it makes one very sick and all tests come back as normal. Many people get the red pin ****k dots with it too. Do a search, it might jog your memory for other symptoms that you may have brushed off. Hope you feel better.
    Anonymous 42789 Replies Flag this Response
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