May I introduce myself...

July 4, 2008

I'm a 39 year old Australian woman living in Italy. I just found out

today that I have PSC. Although am waiting on final conclusion from

some blood work I have had done recently. Please excuse my naivity

and ignorance on this disease so far, I'm hoping to learn more

through support groups.

In 1988 in Australia I had a gall stone attack, was given a dose of

pethadine then sent home with no follow up. In 1999 here in Italy the

same thing only they kept me hospitalized for 2 weeks,they also found

small stones in my liver and wanted to export my gall bladder but I

opposed (call it intuition). I found an Italian specialist soon after

in 2000 who found microstones in my intrahepatic ducts and put me on

Urso 450 twice a day. In 2002 I stopped during pregnancy against my

specialists wishes but my gyneacologist begged me to stop (what would

you do??).

I had a check up in 2003 and my liver was fine, no stones, gall

baldder fine and for 3 years I had 2 visits a year and all clear.

Then in 2006 during my second pregnancy i started itching like crazy

in my 7th month, ALP and ALT's extremely high and was given an

emergency c-sec at 8 months. Just 2 months after my 2nd child was

born I had severe cholic for about 3 months on and off and took

Lixidol under the tongue for pain management and was put on Urso 450

3 times a day.

I was booked in for my first ERCP in November 2007, but all clear,

not a stone in sight only a small calcium build up outside of bile

duct and left side liver had bile ducts slightly thinner. Surgeon

said he did not believe it was PSC, especially because I had been

closely monitored for 8 years. RMN all clear. Blood tests all fine.

Last week I started experiencing slight pain in right upper quadrant,

didn't think much of it, Last Sunday I started getting itchy and

called my liver specialist immediately. Since Tuesday I have been in

and out of hospital getting ultrasounds, blood work, RMN and asked a

heap of questions. On Monday I have to have another type of bloodwork

done and yet another RMN (????) from todays ultrasound (1 hour

long!!!) my doc tells me that my liver is enlarged and resting on my

spleen, the blood pressure in the ducts is fine and my liver is very

healthy except for some bile ducts scarred. My bloodwork came back

normal and they are now arranging for me to have a liver biopsy to

determine more.

I'm confused, how did they determine that I have PSC? I asked at the

time but I still have a problem with the language especially when in

shock. Maybe I'm still asymptomatic?? But still having pains in my

chest and they said that can't do anything???

Sorry if I'm blubbering, I'm just so glad that I found you all. I

hope that there are some happy endings out there! I'm not going to

let this beat me!

July 4, 2008

The majority of our members are in the US, so you may not hear much this (holiday) weekend. There are a more than a few " down under " members (Penny, Ronwyn, , Richelle - hopefully, New Zealand counts as " down under " !), and at least one Italian member. There are also more than a few who have gone/are going through pregnancy with PSC. I'm sure you'll hear from them shortly.

Your history does sound a little unusual, but URQ pain, pruritis (itchy) and " scarred bile ducts " certainly sounds like some sort of bile duct involvement. These are very good questions; I'm sure others will chime in by Monday.

Welcome (and as we say, sorry you found us, but glad you found us)!

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On Behalf Of kmmeucci

I'm a 39 year old Australian woman living in Italy. I just found out

today that I have PSC. Although am waiting on final conclusion from

some blood work I have had done recently...

Sorry if I'm blubbering, I'm just so glad that I found you all. I

hope that there are some happy endings out there! I'm not going to

let this beat me!

July 4, 2008

Welcome a,

Sorry your diagnosis led you to look for us, but we're happy you found us. There are lots of semi happy stories here, lots of us have had PSC a long time (I was diagnosed 19 years ago)

with little or no symptoms, but sad in that you don't hear many stories of people completely breaking free of the disease. But who knows what the future will hold. Shortly after I was diagnosed I was given an old medical text that gave the live expectancy of someone with PSC at 6 years. Medicine has advanced alot since that text was written, and I expect it will continue to advance. I am a Canadian, we are a world wide group!

Ian (52) PSC 89

I'm a 39 year old Australian woman living in Italy. I just found out today that I have PSC. Although am waiting on final conclusion from some blood work I have had done recently. Please excuse my naivity

and ignorance on this disease so far, I'm hoping to learn more through support groups.In 1988 in Australia I had a gall stone attack, was given a dose of pethadine then sent home with no follow up. In 1999 here in Italy the

same thing only they kept me hospitalized for 2 weeks,they also found small stones in my liver and wanted to export my gall bladder but I opposed (call it intuition). I found an Italian specialist soon after in 2000 who found microstones in my intrahepatic ducts and put me on

Urso 450 twice a day. In 2002 I stopped during pregnancy against my specialists wishes but my gyneacologist begged me to stop (what would you do??). I had a check up in 2003 and my liver was fine, no stones, gall

baldder fine and for 3 years I had 2 visits a year and all clear. Then in 2006 during my second pregnancy i started itching like crazy in my 7th month, ALP and ALT's extremely high and was given an emergency c-sec at 8 months. Just 2 months after my 2nd child was

born I had severe cholic for about 3 months on and off and took Lixidol under the tongue for pain management and was put on Urso 450 3 times a day. I was booked in for my first ERCP in November 2007, but all clear,

not a stone in sight only a small calcium build up outside of bile duct and left side liver had bile ducts slightly thinner. Surgeon said he did not believe it was PSC, especially because I had been closely monitored for 8 years. RMN all clear. Blood tests all fine.

Last week I started experiencing slight pain in right upper quadrant, didn't think much of it, Last Sunday I started getting itchy and called my liver specialist immediately. Since Tuesday I have been in and out of hospital getting ultrasounds, blood work, RMN and asked a

heap of questions. On Monday I have to have another type of bloodwork done and yet another RMN (????) from todays ultrasound (1 hour long!!!) my doc tells me that my liver is enlarged and resting on my spleen, the blood pressure in the ducts is fine and my liver is very

healthy except for some bile ducts scarred. My bloodwork came back normal and they are now arranging for me to have a liver biopsy to determine more.I'm confused, how did they determine that I have PSC? I asked at the

time but I still have a problem with the language especially when in shock. Maybe I'm still asymptomatic?? But still having pains in my chest and they said that can't do anything???Sorry if I'm blubbering, I'm just so glad that I found you all. I

hope that there are some happy endings out there! I'm not going to let this beat me! -- Ian Cribb P.Eng.

July 4, 2008