Very confused but extremely happy!

August 31, 2008

I'm a lurker...diagnosed with PSC July 3 of this year after 20 year

history of recurrent gall stones, intrahepatic stones and frequent

cholangitis attacks.

Since diagnosis I have had a series of US, CholangioRMN's, CT scan and

gastroscopy.

Last week I went to Bologna to have a liver biopsy (I'm in Italy) and

after a lengthy meeting with Dr Bolondi who went over all of my test

results and doing another US he " undiagnosed " me of PSC, said I didn't

need a biopsy and that my bile ducts were " just scarred from so many

cholangitis attacks caused from gallstones " .

I must say that I'm relieved (to say the least) and also a bit

reluctant to completely believe him 100%....he did not give me any

reasons as to why I'm full of stones and having recurrent pain in my

chest. I even asked about possible flukes/parasites...no.

For now I am just to take antibiotics 4 days a month to eliminate the

possibilty of infection in my intestines??!!

If I have another cholangitis attack I am to go in and have an ERCP

immediately for stenting....

I'm still going to check in on you all and hope to read lots of happy

posts..

a

August 31, 2008

I have been through very similar situations. My gallbladder was

removed in 1996; however, the pain kept coming. I would go for

Sonograms and nothing would be found; however, hey kept telling me

that they thought I was having reucrrent stones forming in my liver,

since my gall bladder had been removed. Finally in 2003, my liver

enzymes went up an stayed up, especially the ALP. My ERCP was normal;

however, the hepatologist conducted a biopsy, which lead to a

diagnosis of either PSC or PBC. PB was rulled out when I had

negative AMA result. SInce then I have had several different Dr.'s

mostly due to insurance provider changes and everyone agreed with the

PSC diagnosis. MY MRCP's showed narrowing and beading throughout my

liver, which again indicate PSC.Last year, I was sent to

a " secialist " at s Hopkins, who conducteda cholagiogram and

desided that I did not have PSC, just a fatty liver. When I asked him

about my previous tests, he simply statd, that he is a specialist and

knws what he is talking about. I was unwilling to accept his answer

and went to my Primary are physician who ordered a test called ALP

fractionalization(spelled wrong)which indicated that I was in the

adanced stages of liver disease and high wich for CCA. Apparently

this test can determine exactly where the ALP is coming from and the

two different types of Liver ALP inicate the extent of damage and

possible risk of CCA. My Dr. then ordered another biopsy, which was

sent to two different labs and had four different test ran. Ths

indicated that I either have small duct PSC, PBC, or autoimmune

hepatitis because my small ducts are being obliterated and in some

areas are completely missing and my large ducts are begining to be

infiltrated. The pathologist gave the name of a Dr. t my physician

who she thought would be able to treat me. I will be seeing that Dr.

on 9/15.

What I have sinced learned is that cholangiograms often cannot be used

to diagnose small duct PSC and that because I do not have IBD and am

female, I don't fit the typical PSC patiet profile. Many Dr.'s cannot

think otsid of the box. I encourage you to get another opinion and to

push for a biopsy. The biopsy has been the only truly diffinitive

tool for diagnosing me.

Good luck to you.

> Last week I went to Bologna to have a liver biopsy (I'm in Italy)

and

> after a lengthy meeting with Dr Bolondi who went over all of my test

> results and doing another US he " undiagnosed " me of PSC, said I

didn't

> need a biopsy and that my bile ducts were " just scarred from so many

> cholangitis attacks caused from gallstones " .

>

August 31, 2008