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Hello

In the winter/spring of 2007 it was discovered that I had elevated

liver enzymes/lab tests. A following MRCP showed narrowing of some

bile ducts. I was told that I most likely had PSC. This came as shock

to me, and I've been thinking a lot about it. I do not have

UC/Chrons.

Anyway, in the fall 2007 my lab tests had returned to normal, they

were actually in the lower part of normal. All I had done was to eat

less junk food, excercise more and lost about 12 pounds of weight.

The tests remained normal for the rest of the fall.

In january this year I had a liver biopsy done, the results showed

nothing. Everything looked normal except for some minor accumulation

of iron. Again the blood tests were normal except for elevated

ferritin.

Is it possible to have PSC, and not havin it proved by biopsy? I've

been sent to another hspital, and they'll probably do an ERCP, which

I'm a little scared of after reading stories on the net about

possible side effects.

Could the MRCP have been distorted? It's kind of frustrating.

Although it's good news that there's nothing wrong with the liver or

bile ducts in the areas that the MRCP showed narrowing I don't want

to get my hopes up to soon.

Has anybody had similar experiences?

Andy

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Yes, very similar thing happened with . Bloodwork from a physical

showed elevated alkaline phos....whatever that is, but nothing else.

Months later he had bouts of what we know now to be cholangitis. They

didn't find anything from a liver biopsy, but the ERCP showed

extensive narrowing and areas of dilation in the ducts. He went on the

ursodiol and had no symptoms for almost 8 years. He's had cholangitis

about once a year for the past 4 years; they go in and do an ERCP to

clean everything out and then he's almost symptom free for another

year. This last ERCP they found cancer in it's very earliest stage

which has been an adventure, but he will live through it and should be

fine.

The fact that the liver biopsy showed nothing is good. It would seem

that they found your psc early. My advice would be to take the

ursodiol and stay in good shape; live well. Enjoy good labs. It could

be years and years and years before you have to deal with anything

radically unpleasant. By then, they will be growing livers in a petri

dish and all of us that have had to wait for someone else's untimely

demise in order to live will be wildly envious, but grateful for the

miraculous advances in medicine.

Franson,

Wife of (psc 1994, CCa 2007)

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My transplant hep told me is more unusual to have a liver biopsy show

PSC than for it not to show it. The area the tissue was taken from

is pretty random so it does not always show up. an ERCP or MRCP is a

better diagnostic tool.

PSC5/07 Listed

>

> Hello

>

> In the winter/spring of 2007 it was discovered that I had elevated

> liver enzymes/lab tests. A following MRCP showed narrowing of some

> bile ducts. I was told that I most likely had PSC. This came as

shock

> to me, and I've been thinking a lot about it. I do not have

> UC/Chrons.

>

> Anyway, in the fall 2007 my lab tests had returned to normal, they

> were actually in the lower part of normal. All I had done was to

eat

> less junk food, excercise more and lost about 12 pounds of weight.

> The tests remained normal for the rest of the fall.

>

> In january this year I had a liver biopsy done, the results showed

> nothing. Everything looked normal except for some minor

accumulation

> of iron. Again the blood tests were normal except for elevated

> ferritin.

>

> Is it possible to have PSC, and not havin it proved by biopsy? I've

> been sent to another hspital, and they'll probably do an ERCP,

which

> I'm a little scared of after reading stories on the net about

> possible side effects.

>

> Could the MRCP have been distorted? It's kind of frustrating.

> Although it's good news that there's nothing wrong with the liver

or

> bile ducts in the areas that the MRCP showed narrowing I don't want

> to get my hopes up to soon.

>

> Has anybody had similar experiences?

>

> Andy

>

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My liver enzymes are sometimes normal too, I'm not sure why the

fluctuate. Doctors for dx me with PBC but when a biopsy showed that

there wasn't much wrong they did an MRCP to see if they could see

anything because I still have pain. The MRCP showed extreme narrowing

of the bile ducts and it looked like my common bile duct was very

damaged.

So I had an ERCP done which showed that the MRCP made things look a

lot worse than they really were. I still have PSC which was proven by

the ERCP but it's not as bad as the doctors suspected after I had my

MRCP.

PSC 8.07

PBC 10.06

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That's the spirit I wish I had….

Chaim

Boermeester

From: [mailto: ] On Behalf Of scottefranson

Sent: Tuesday, February 05, 2008

21:49

To:

Subject: Re: What's

going on?

Yes, very similar thing happened with . Bloodwork

from a physical

showed elevated alkaline phos....whatever that is, but nothing else.

Months later he had bouts of what we know now to be cholangitis. They

didn't find anything from a liver biopsy, but the ERCP showed

extensive narrowing and areas of dilation in the ducts. He went on the

ursodiol and had no symptoms for almost 8 years. He's had cholangitis

about once a year for the past 4 years; they go in and do an ERCP to

clean everything out and then he's almost symptom free for another

year. This last ERCP they found cancer in it's very earliest stage

which has been an adventure, but he will live through it and should be

fine.

The fact that the liver biopsy showed nothing is good. It would seem

that they found your psc early. My advice would be to take the

ursodiol and stay in good shape; live well. Enjoy good labs. It could

be years and years and years before you have to deal with anything

radically unpleasant. By then, they will be growing livers in a petri

dish and all of us that have had to wait for someone else's untimely

demise in order to live will be wildly envious, but grateful for the

miraculous advances in medicine.

Franson,

Wife of (psc 1994, CCa 2007)

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