RE: Re: Very confused but extremely happy!

[Guest guest]

Hi all!Hope all is ok by all!I am not sure what the term "undiagnosed" is supposed to mean. I believe you mean remission. To Richelle:How often didyou have an evaluation via Ercp or mrcp?

Hi a

I was originally diagnosed with psc 11 years ago, undiagnosed 2.5

years ago, rediagnosed in March this year, after a year of very

painful cholangitis attacks. I didn't know what they were so I

didn't do anything about it until the last one. By then I thought I

had cancer. My problem is that because I was undiagnosed then I

haven't been monitored for 2.5 years, now my bile ducts have closed

up and I can't be stented. If I was you I would be a bit dubious

about the undiagnosis. My understanding is that proper diagnosis is

made by an MRI scan or an ERCP and it doesn't seem to me that you

have had either of these. Personally if I was you I would be pushing

for a definite diagnosis (or undiagnosis) with either an MRI or

ERCP. I'm now paying the price for not being assertive enough.

Richelle

New Zealand

>

> 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

>

[Guest guest]

Hi all!Hope all is ok by all!I am not sure what the term "undiagnosed" is supposed to mean. I believe you mean remission. To Richelle:How often didyou have an evaluation via Ercp or mrcp?

Hi a

I was originally diagnosed with psc 11 years ago, undiagnosed 2.5

years ago, rediagnosed in March this year, after a year of very

painful cholangitis attacks. I didn't know what they were so I

didn't do anything about it until the last one. By then I thought I

had cancer. My problem is that because I was undiagnosed then I

haven't been monitored for 2.5 years, now my bile ducts have closed

up and I can't be stented. If I was you I would be a bit dubious

about the undiagnosis. My understanding is that proper diagnosis is

made by an MRI scan or an ERCP and it doesn't seem to me that you

have had either of these. Personally if I was you I would be pushing

for a definite diagnosis (or undiagnosis) with either an MRI or

ERCP. I'm now paying the price for not being assertive enough.

Richelle

New Zealand

>

> 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

>

[Guest guest]

Hi all!Hope all is ok by all!I am not sure what the term "undiagnosed" is supposed to mean. I believe you mean remission. To Richelle:How often didyou have an evaluation via Ercp or mrcp?

Hi a

I was originally diagnosed with psc 11 years ago, undiagnosed 2.5

years ago, rediagnosed in March this year, after a year of very

painful cholangitis attacks. I didn't know what they were so I

didn't do anything about it until the last one. By then I thought I

had cancer. My problem is that because I was undiagnosed then I

haven't been monitored for 2.5 years, now my bile ducts have closed

up and I can't be stented. If I was you I would be a bit dubious

about the undiagnosis. My understanding is that proper diagnosis is

made by an MRI scan or an ERCP and it doesn't seem to me that you

have had either of these. Personally if I was you I would be pushing

for a definite diagnosis (or undiagnosis) with either an MRI or

ERCP. I'm now paying the price for not being assertive enough.

Richelle

New Zealand

>

> 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

>

[Guest guest]

When you have small duct PSC it can take a looooong time for a diagnosis. PSC was suspected in me in 2000. I got a diagnosis of PSC about 2002 and was later told I didn't have it. In 2006 I was rediagnosed. I was always about 99% sure I had PSC. So as nice as it is to be told you don't have PSC, I would be skeptical.Marie

UC, J-pouch, PSC, Autoimmune hepatitis, adrenal gland insufficiency. Talk to your Yahoo! Friends via Windows Live Messenger. Find Out How