PBC possible with normal AMA results

[bowlingbambam]

For the last 10 yrs I have had moderate to high elevated liver enzymes.  I have severe itching, skin darking on arms and back in splotchs.  I have experienced muscle pain and fatigue and also joint pain. Upper right quadrant pain is a daily thing. Liver biopsy was non specific with mild portal and lobular inflammation.  AMA was normal, ENA was positive. Had MRI, CT's, Ultrasounds.  Tested for all neurological and mucsclular along with RA and Lupus all ruled out.  What is possiblity of PCB with a normal AMA result.  I have severe drug allergies and also experience periods of mental problems, ie: memory, unable to concentrate. I am a 50 yr old female that has run out of patience with the medical profession and am tired of not being able to live my life normally without pain.  Any information will be appreciated.

[annainitaly]

there is an AMA-negative type of autoimmune hepatitis, here it is called autoimmune cholangitis. the differential diagnosis by liver biopsy is tricky, sometimes. it responds well to treatment with immunesuppressants (azioprine)and steroids (prednisone).

also, try check here:
http://pbcers.org/
all the best to you
a.

[bowlingbambam]

have been testes hepatitis , A,B,C negative however hep b surface was noted to be borderline what ever that means.  I have had Liver Biopsy already.  Non Specific findings. thanks about info on new x-ray will have to ask Dr. bout that one.  Just got to find a new gastro first.  Thanks

[jmjm530]

You know, the obvious just occured to me...have you been tested for hepatitis a, b or c? I'm sure you have, but if not, I'd say that is a good next step.

-- Jim

[jmjm530]

Sorry you've been suffering so long.

As you probably know, most of us here are either in treatment or about to go into treatment for hepatitis c. Not to many experts on primary billateral cirrhosis (PBC). That said, a lot of us can relate to "running out of patience with the medical profession." :)

I don't know the odds of normal AMA results correlating with PBC but it seems you've had all the other tests such as ultrasoutnd, MRI , CT's. You would have think PBC would have been picked up?

There's always liver biopsy but you would have to convince a doctor it's indicated and that might not be easy.

We have a blood-marker test called Fibrosure available by labcorp. Some use it for measuring fibrosis/cirhosis in hep c patients. Don't know if it works if you don't have hep c. Maybe you can check that out. Also a new x-ray device called Firbroscan just entering this country. Been used in Europe a lot to measure liver fibrosis/stiffnes. Again, not sure how it correlates to the non hep c population.

There's also a few discussion groups that deal more with cirrhosis and end stage liver disease. Someone over at the janis site posted the name recently. You might try over there and see if anyone remembers the site. http://forums.delphiforums.com/friendship7/messages/?msg=22134.1

Again, we're not doctors here but to me your symptons don't sound like cirrhosis in light of the testing you've done. Maybe others can relate to the symptons better and offer alternate suggestions.

Thanks for stopping by.

-- Jim