Discussions By Condition: I cannot get a diagnosis.

I am desperate!

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: cibolomom
  • May 21, 2009
  • 07:43 PM

I'm a 43 year old woman. In August of 2006 I had a hysterectomy after hemorrhaging (sp). Six weeks later, I noticed I was getting a rash on my lower leg. Then I started having really bad bowel problems- if it wasn't one, it was the other. My hair started falling out. I was so fatiqued that I would fall asleep sitting up in the middle of the day.

I was diagnosed with lupus and then told I didn't have it.
I was diagnosed with RA and then told I didn't have it.
I was diagnosed with PBC (primary biliary cirrohsis), barely perceptable, through a liver biopsy.

The rash went away on it's own after 2 YEARS and 20 medications for it (antibiotics, antifungals, corticosteriods, etc). Went away when I stopped going to doctors.

I am taking Ursodiol for the PBC and Nexium for GERD (which I have developed since the surgery). I also have a serving of Activia.

I still feel like crap. I have no energy, am afraid to be too far from a bathroom (when I gotta go- I gotta go now. It is usually pure liquid and sometimes bloody). My hair is so thin. My docs (gp and gastro) say they don't know what is wrong- but something is. I asked about an IBD, and was told that since I am overweight (also gained about 40 pounds since everything started) that is highly unlikely.

Today I noticed that I have 2 patches of the rash back.

I need help!

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2 Replies:

  • Did anyone check you for celiac disease? Try this National Institute of Health site: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
    aquila 1,263 Replies Flag this Response
  • Thanks for your reply! I did have a blood test that they said was negative for celiac and that is when they said I had PBC. I would also like to add that I have joint pain in both shoulders and my right hand.
    cibolomom 1 Replies Flag this Response
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