Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 What does PBC stand for? Is is Primary Biliary Cholangitis? Just guessing. Jodi - age 9 dx PSC 6-99 Reply-To: egroups To: <egroups> Subject: Re: PBC vs PSC Date: Tue, 7 Sep 1999 11:13:59 -0700 , I am the last person that I thought would be answering questions, but I think I have your answer. If I'm not mistaken, the difference is that PBC is inflammation and eventual scarring & obstruction of the bile ducts INSIDE the liver. PSC is the same but affects the bile ducts both INSIDE and OUTSIDE the liver. Also, what is the difference between > PSC, and PBC? Both effect the bile ducts, and both turn into cirrhosis right? > Thanks, > Love, > > > ------------------------------------------------------------------------ > MyPoints-Free Rewards When You're Online. > Start with up to 150 Points for joining! > http://clickhere./click/805 > > > eGroups.com home: /group/ > - Simplifying group communications > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 , I am the last person that I thought would be answering questions, but I think I have your answer. If I'm not mistaken, the difference is that PBC is inflammation and eventual scarring & obstruction of the bile ducts INSIDE the liver. PSC is the same but affects the bile ducts both INSIDE and OUTSIDE the liver. Also, what is the difference between > PSC, and PBC? Both effect the bile ducts, and both turn into cirrhosis right? > Thanks, > Love, > > > ------------------------------------------------------------------------ > MyPoints-Free Rewards When You're Online. > Start with up to 150 Points for joining! > http://clickhere./click/805 > > > eGroups.com home: /group/ > - Simplifying group communications > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 For some reason, I am just not comfortable with my diagnosis. I have come to grips with the fact that I have a liver disease, I just really don't think it is PSC. I have the ERCP on Sept. 22nd, I will let you all know how that goes. I am sooooo nervous about it, and I will explain why after I have the test. Hope everyone is doing great, Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 Hi! PBC is short for Primary Biliary Cirrhosis. There is a PBC website like our PSC; in fact, I was on the PBC before the PSC because I couldn't find the PSC website. This (PBC) is a fantastic site -- Linie and Joanne started it and the information obtained through this site is wonderful. If you get on the PBC site, you will see that a lot of the symptoms are the same. Hugs, Biddy Re: PBC vs PSC >Date: Tue, 7 Sep 1999 11:13:59 -0700 > >, > >I am the last person that I thought would be answering questions, but I >think I have your answer. If I'm not mistaken, the difference is that PBC >is inflammation and eventual scarring & obstruction of the bile ducts INSIDE >the liver. PSC is the same but affects the bile ducts both INSIDE and >OUTSIDE the liver. > > > > >Also, what is the difference between > > PSC, and PBC? Both effect the bile ducts, and both turn into cirrhosis >right? > > Thanks, > > Love, > > > > > > ------------------------------------------------------------------------ > > MyPoints-Free Rewards When You're Online. > > Start with up to 150 Points for joining! > > http://clickhere./click/805 > > > > > > eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > >------------------------------------------------------------------------ >MyPoints-Free Rewards When You're Online. >Start with up to 150 Points for joining! >http://clickhere./click/805 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 Jodi, The e-mail address for the PBC site is: PBCers@... Hugs, Biddy Re: PBC vs PSC >Date: Tue, 7 Sep 1999 11:13:59 -0700 > >, > >I am the last person that I thought would be answering questions, but I >think I have your answer. If I'm not mistaken, the difference is that PBC >is inflammation and eventual scarring & obstruction of the bile ducts INSIDE >the liver. PSC is the same but affects the bile ducts both INSIDE and >OUTSIDE the liver. > > > > >Also, what is the difference between > > PSC, and PBC? Both effect the bile ducts, and both turn into cirrhosis >right? > > Thanks, > > Love, > > > > > > ------------------------------------------------------------------------ > > MyPoints-Free Rewards When You're Online. > > Start with up to 150 Points for joining! > > http://clickhere./click/805 > > > > > > eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > >------------------------------------------------------------------------ >MyPoints-Free Rewards When You're Online. >Start with up to 150 Points for joining! >http://clickhere./click/805 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 Tim, here is what I KNOW I have (without putting a diagnosis on it). I have chronic inflammation of the liver, (my Dr. attributes this to the activity in the bile ducts), I have scar tissue in the bile ducts, lesions in the bile ducts...and from what I can remember him saying, I have scar tissue on my actual liver. Does this sound like PSC? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 Okay, the reason why I am wondering if I don't have PSC is because an ERCP is the key way of diagnosing this disease. When my Dr. got the results of my first biopsy in Jan of 97, it said that it looked like the early stages of PSC. He did an ERCP to confirm the diagnosis, and my bile ducts looked GREAT!!!! (this is still with having elevated liver enzymes), when I had the liver wedge biopsy done in Aug. 98 the hospital pathology, and an independant Liver pathologist both said it was PSC. So, I am wondering what the ERCP will show when I have it done. Maybe it is just wishful thinking..but I'm having a hard time swallowing this diagnosis. And, at my last Dr's appt. my Dr. wouldn't say " Yes, I am positive that you have this disease " , he said that we could just wait and see what happened, to know for sure if it was PSC. So, even though I have had 3 diagnosis of PSC, it seems strange that it wouldn't have shown up on the ERCP. Hope this wasn't too confusing. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 I couldn't say what the difference between PSC and PBC was either. So I took Roy's advice and searched MEDLINE, http://www.ncbi.nlm.nih.gov/PubMed/. Several abstracts had references to characteristics of PSC. What I got out of them was that PSC leaves the ducts a fibrous scar-like mass, which in the case of small ductules are re-absorbed and disappear like the scar tissue of a paper cut. Whereas in PBC the ducts are attacked by the immune system and just disappear. Either way the liver is left without the micro-ducts it needs to drain off the bile, causing a backup within the liver and into the blood stream. The fibrous scarring of the larger ducts is the biggest diagnostic difference I see between PSC and PBC. Tim Excerpts below. Virchows Arch 1997 Aug; Dienes HP, Lohse AW, et.al.; Institute of Pathology, Cologne University, Germany Primary biliary cirrhosis (PBC) and primary sclerosing cholangitis (PSC) are chronic autoimmune-mediated diseases of the biliary tree, resulting in a loss of bile ducts. There are morphological features that clearly distinguish them from each other: in PBC, there is overt destruction of the bile ducts with disruption of the basement membrane; in PSC there is abundant periductular fibrosis with shrinkage and subsequent loss of the bile ducts. Histopathology 1991 Oct; on RF, Hubscher SG; Department of Pathology, Medical School, University of Birmingham, UK The two characteristic bile duct lesions of primary sclerosing cholangitis, periductal fibrosis and fibro-obliterative scars, were largely confined to medium-sized portal areas. Although present in each case, the number of such lesions varied considerably. Loss of bile ducts was the most conspicuous feature in small portal tracts where the diagnostic duct lesions of primary sclerosing cholangitis were rarely observed. Inflammation, ulceration and cholangiectases of large intrahepatic ducts were common, and appear to be useful additional diagnostic features. Histopathology 1998 May; Casali AM, Carbone G, Cavalli G; Institute of Histology and General Embryology, University of Genova, Italy CONCLUSIONS: The features observed in primary sclerosing cholangitis, as well as the extent of bile duct loss proved to be quite similar to what we had previously described in primary biliary cirrhosis. Thus, regardless of the causes and mechanisms leading to the bile duct loss, the quantification of ductopenia produced results which are alike for the two distinct cholestatic diseases. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 , Do you have an alternate diagnosis that better fits your symptoms and test results? Tim --- WYBEAR21@... wrote: > For some reason, I am just not comfortable with my diagnosis. > I have come to > grips with the fact that I have a liver disease, I just really > don't think it > is PSC. I have the ERCP on Sept. 22nd, I will let you all > know how that > goes. I am sooooo nervous about it, and I will explain why > after I have the > test. Hope everyone is doing great, > Love, > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 , Why do you think you don't have PBC? What do you think might be wrong with you? I have had similar feelings about being misdiagnosed. I have posted this several times, but I do think we can help ourselves with this " devil " disease. Why doesn't each of us post what our symptoms were when we first was diagnosed, symptoms before we were diagnosed, did any of us have an " odd " disease or thing that happened -- maybe years ago -- that we didn't pay any attention too. It might also help to have the medical center or hospital where we are treated and by whom. Although this isn't necessary, it just might be of some help. I think we should keep it simple so that when we try to keep account of everyone's post, it won't be as hard: For instance -- Biddy Started with nagging pain in the URQ. Pain started becoming more and more where as it only was about once a month, etc. Discovered PSC Palms very red with the white center Have ulcers -- bleeding] Have very enlarged liver, although it is shrinking now due to the cirrhosing. Have enlarged spleen Extremely sick at my stomach Can't eat much of anything because of the pain Starting to have swelling of the feet and ankles In 1966 I had Scaroidosis In 1987 I started having tremendous itching all over my body with no outward sign of any rash, etc. Lasted at least 2 to 3 months. Diagnosed in 1996 I do hope we all can send some info like this in and maybe we can discover just what happened and is happening to us. Heck, it just might be the water -- who knows. But together, we just might come up with an answer that will lead to the only thing we have to do to rid ourselves is take one pill a day for 3 months!!! What do we have to lose? Please respond. Hugs, Biddy Re: PBC vs PSC >For some reason, I am just not comfortable with my diagnosis. I have come to >grips with the fact that I have a liver disease, I just really don't think it >is PSC. I have the ERCP on Sept. 22nd, I will let you all know how that >goes. I am sooooo nervous about it, and I will explain why after I have the >test. Hope everyone is doing great, >Love, > > >------------------------------------------------------------------------ >MyPoints-Free Rewards When You're Online. >Start with up to 150 Points for joining! >http://clickhere./click/805 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 Tim, I know it says a lot about these two being autoimmune diseases, but I was tested for this and it was negative. Now I remember Dr. Killenberg saying that this is one of the differences between both of them. Go figure. So many stories out there in the big city! Thanks for the info Tim. Hugs, Biddy Re: PBC vs PSC >I couldn't say what the difference between PSC and PBC was >either. So I took Roy's advice and searched MEDLINE, >http://www.ncbi.nlm.nih.gov/PubMed/. > >Several abstracts had references to characteristics of PSC. What >I got out of them was that PSC leaves the ducts a fibrous >scar-like mass, which in the case of small ductules are >re-absorbed and disappear like the scar tissue of a paper cut. >Whereas in PBC the ducts are attacked by the immune system and >just disappear. Either way the liver is left without the >micro-ducts it needs to drain off the bile, causing a backup >within the liver and into the blood stream. The fibrous scarring >of the larger ducts is the biggest diagnostic difference I see >between PSC and PBC. > >Tim >Excerpts below. > >Virchows Arch 1997 Aug; Dienes HP, Lohse AW, et.al.; Institute >of Pathology, Cologne University, Germany > Primary biliary cirrhosis (PBC) and primary sclerosing >cholangitis (PSC) are chronic autoimmune-mediated diseases of >the >biliary tree, resulting in a loss of bile ducts. There are >morphological features that clearly distinguish them from each >other: in PBC, there is overt destruction of the bile ducts with >disruption of the basement membrane; in PSC there is abundant >periductular fibrosis with shrinkage and subsequent loss of the >bile ducts. > >Histopathology 1991 Oct; on RF, Hubscher SG; Department of >Pathology, Medical School, University of Birmingham, UK > The two characteristic bile duct lesions of primary sclerosing >cholangitis, periductal fibrosis and fibro-obliterative scars, >were largely confined to medium-sized portal areas. Although >present in each case, the number of such lesions varied >considerably. Loss of bile ducts was the most conspicuous >feature in small portal tracts where the diagnostic duct lesions >of primary sclerosing cholangitis were rarely observed. >Inflammation, ulceration and cholangiectases of large >intrahepatic ducts were common, and appear to be useful >additional diagnostic features. > >Histopathology 1998 May; Casali AM, Carbone G, Cavalli G; >Institute of Histology and General Embryology, University of >Genova, Italy > CONCLUSIONS: The features observed in primary sclerosing >cholangitis, as well as the extent of bile duct loss proved to >be quite similar to what we had previously described in primary >biliary cirrhosis. Thus, regardless of the causes and mechanisms >leading to the bile duct loss, the quantification of ductopenia >produced results which are alike for the two distinct >cholestatic diseases. > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 , Not to be discouraging, but 's first ERCP didn't show conclusively PSC but his second one three years later did. I think the doctors suspected it all along but didn't want to scare us until they knew for sure. Jodi Jodi Rhoades, 's Mom (age 9 - diagnosed with PSC 6-99) " For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope. " 29:11 ! From: WYBEAR21@... Reply-To: egroups To: egroups Subject: Re: PBC vs PSC Date: Wed, 8 Sep 1999 01:04:07 EDT Okay, the reason why I am wondering if I don't have PSC is because an ERCP is the key way of diagnosing this disease. When my Dr. got the results of my first biopsy in Jan of 97, it said that it looked like the early stages of PSC. He did an ERCP to confirm the diagnosis, and my bile ducts looked GREAT!!!! (this is still with having elevated liver enzymes), when I had the liver wedge biopsy done in Aug. 98 the hospital pathology, and an independant Liver pathologist both said it was PSC. So, I am wondering what the ERCP will show when I have it done. Maybe it is just wishful thinking..but I'm having a hard time swallowing this diagnosis. And, at my last Dr's appt. my Dr. wouldn't say " Yes, I am positive that you have this disease " , he said that we could just wait and see what happened, to know for sure if it was PSC. So, even though I have had 3 diagnosis of PSC, it seems strange that it wouldn't have shown up on the ERCP. Hope this wasn't too confusing. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 So am I understanding right, are you saying that the ERCP is pretty conclusive in diagnosing PSC? Just hoping for a miracle, Vicki 38 Ohio dx PSC 6/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 cstaple-@... wrote: original article:/group//?start=4066 > So am I understanding right, are you saying that the ERCP is pretty > conclusive in diagnosing PSC? > Just hoping for a miracle, > Vicki 38 Ohio dx PSC 6/99 Hi Vicki, I am new to posting and the support group, but, yes my GI just answered that question. My ERCP's (4 of them) have all indicated that both my inner and external bile ducts are involved, which indicates PSC. Plus, I have a lifelong history of Uclerative Colitis. I felt that maybe I really had PBC and requested an AMA. I just got the results today and they are negative. In 95% of the patients with PBC, the results will be positive. My GI is basing my diagnosis of PSC on a history of Ulcerative Colitis, ERCP, elevated LFTs, and as of today, a negative AMA blood test. I had asked the GI about a biopsy, but he said it really is not warrented at this point. I was diagnosed in 1989, and I have had 3 balloon dilatations of the bile ducts. I am taking actigall, and after 10 years, I am still doing very well. Today, with all the medical treatment available to us, a diagnosis of PSC is no longer as bleak as it was even 10 years ago when the only treatment was a transplant, if and when it became necessary. Hugs Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Isn't it amazing how fast we learn all this technical stuff... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 , I, like Jodi, feel you may be disappointed when your ERCP results come back. If the biopsies have shown the characteristics of PSC - fibrous tissue in place of smooth in the ducts - then it is just a matter of time before the major ducts that show up during an ERCP are involved. In my case after 8 years of high LFTs only half of the ducts showed any evidence of PSC when I had my first ERCP. So if your PSC was detected early, it would not have progressed to a state where it could be seen via ERCP. Tim ltx 4/4/98 > From: WYBEAR21@... > Subject: Re: PBC vs PSC > Date: Wed, 8 Sep 1999 01:04:07 EDT > > Okay, the reason why I am wondering if I don't have PSC is > because an ERCP > is > the key way of diagnosing this disease. When my Dr. got the > results of my > first biopsy in Jan of 97, it said that it looked like the > early stages of > PSC. He did an ERCP to confirm the diagnosis, and my bile > ducts looked > GREAT!!!! (this is still with having elevated liver enzymes), > when I had > the > liver wedge biopsy done in Aug. 98 the hospital pathology, and > an > independant > Liver pathologist both said it was PSC. So, I am wondering > what the ERCP > will show when I have it done. Maybe it is just wishful > thinking..but I'm > having a hard time swallowing this diagnosis. ... > Love, > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Tim, Are you saying that since Phil's main bile duct is severly scarred that he is in the advanced stages of PSC, in his case they are saying that the liver is not involved yet. Can it work in the reverse? I'm confused. Peg Romlein wrote: > , > I, like Jodi, feel you may be disappointed when your ERCP > results come back. If the biopsies have shown the > characteristics of PSC - fibrous tissue in place of smooth in > the ducts - then it is just a matter of time before the major > ducts that show up during an ERCP are involved. In my case after > 8 years of high LFTs only half of the ducts showed any evidence > of PSC when I had my first ERCP. So if your PSC was detected > early, it would not have progressed to a state where it could be > seen via ERCP. > Tim ltx 4/4/98 > > > From: WYBEAR21@... > > Subject: Re: PBC vs PSC > > Date: Wed, 8 Sep 1999 01:04:07 EDT > > > > Okay, the reason why I am wondering if I don't have PSC is > > because an ERCP > > is > > the key way of diagnosing this disease. When my Dr. got the > > results of my > > first biopsy in Jan of 97, it said that it looked like the > > early stages of > > PSC. He did an ERCP to confirm the diagnosis, and my bile > > ducts looked > > GREAT!!!! (this is still with having elevated liver enzymes), > > when I had > > the > > liver wedge biopsy done in Aug. 98 the hospital pathology, and > > an > > independant > > Liver pathologist both said it was PSC. So, I am wondering > > what the ERCP > > will show when I have it done. Maybe it is just wishful > > thinking..but I'm > > having a hard time swallowing this diagnosis. ... > > Love, > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Tim, Thanks for posting that article, as it gives n excellent description of the two diseases. PBC and PSC are often referred to as " two sides of the same coin " because of the autoimmune commonalties they share, even though the destruction patterns are different.(fibrous vs. direct duct destruction.) Also, PSC is primarily in males, about 75% of the time, whereas PBC strikes about 75% of the time in females. Did you find any other references to associated autoimmune disorders, a la UC, with PBC? Spiro EMT-P Organ Recovery/Placement Coordinator Finger Lakes Donor Recovery Network Liver Transplant - 8/1/97 RECYCLE YOURSELF! BE AN ORGAN DONOR! " I'm not in the business. I am the business " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Yes it does. Re: PBC vs PSC > Tim, here is what I KNOW I have (without putting a diagnosis on it). I have > chronic inflammation of the liver, (my Dr. attributes this to the activity in > the bile ducts), I have scar tissue in the bile ducts, lesions in the bile > ducts...and from what I can remember him saying, I have scar tissue on my > actual liver. Does this sound like PSC? > > > ------------------------------------------------------------------------ > MyPoints-Free Rewards When You're Online. > Start with up to 150 Points for joining! > http://clickhere./click/805 > > > eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 No I didn't look for any associated disorders, I searched for PBC and when I found 1 abstract comparing it to PSC I searched on PSC. Turning up the 3 I quoted from (out of about 25). As Roy said, they are written for a medical audience but are understandable with a little effort and help. Tim ltx 4/4/98 MI --- Dspiro wrote: > Tim, > Thanks for posting that article, as it gives n excellent > description of the > two diseases. PBC and PSC are often referred to as " two sides > of the same > coin " because of the autoimmune commonalties they share, even > though the > destruction patterns are different.(fibrous vs. direct duct > destruction.) > Also, PSC is primarily in males, about 75% of the time, > whereas PBC strikes > about 75% of the time in females. Did you find any other > references to > associated autoimmune disorders, a la UC, with PBC? > > Spiro EMT-P > Organ Recovery/Placement Coordinator > Finger Lakes Donor Recovery Network > > Liver Transplant - 8/1/97 > RECYCLE YOURSELF! BE AN ORGAN DONOR! > > " I'm not in the business. I am the business " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 and Vicki, 'Fraid the answer is yes, sounds like PSC and ERCP the standard test. Peg, I'm saying that the first signs of PSC (and probably PBC) are the elevated LFTs. If those are detected early, there may not be any evidence of PSC when a ERCP is done. The damage may be confined to very tiny ducts in a small area of the liver. 3 to 5 years later the scarring of the ducts may be clear in an ERCP. 5 to 10 years later it might be referred to as sever scarring, causing occasional blockage and infections. Another 5 to 10 years might pass before liver failure sets in. (Please don't take these timings as absolutes - they are based on personal experience and that of others and should be used only as guidelines). From your description of Phil and his activity level I would estimate that he is at about the same point I was when 75 to 80% of the way between first signs and transplant (year 13 or 14 out of 18). Talk with your docs to get their more informed opinion about where they would place Phil on the timeline of PSC. Tim --- Peggy Alfeld wrote: > Tim, > Are you saying that since Phil's main bile duct is severly > scarred that he is in the advanced stages of PSC, in his case > they are saying that the liver is not involved yet. Can it > work in the reverse? I'm confused. > Peg > > Romlein wrote: > > > , > > I, like Jodi, feel you may be disappointed when your ERCP > > results come back. If the biopsies have shown the > > characteristics of PSC - fibrous tissue in place of smooth > in > > the ducts - then it is just a matter of time before the > major > > ducts that show up during an ERCP are involved. In my case > after > > 8 years of high LFTs only half of the ducts showed any > evidence > > of PSC when I had my first ERCP. So if your PSC was detected > > early, it would not have progressed to a state where it > could be > > seen via ERCP. > > Tim ltx 4/4/98 > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Hi ! I have had 7 liver biopsies and 8 ERCP's! All the results say I have PSC and the last ERCP that was performed at Duke the doc that did the ERCP said that I wasn't far from a liver TX. My first liver biopsy and all since have increased scarring in my liver and the last ERCP showed the scarring of the liver and constrictor of bile ducts. Don't ask me which ones -- I don't know. But the performed a procedure where they used a balloon to inflate the bile duct (s). They said it should get rid of the pain. WRONG!!! This disease is so very confusing and I do believe that the docs really don't know more than we do -- with the exception of biopsies and ERCP's -- and then I wonder. My son, who is a doc, always said that he did NOT want me to have to have a TX because everything isn't " peachy (my word) " as most centers paint the picture. He said it is truly a very dangerous operation and so many do not make it. I have told him that I have heard of only one person on this entire site that died from the operation -- that everyone else is getting along fantastic. He now knows that nothing but a TX will ever make me well and that upsets him so very much. So confusing. Hugs, Biddy Re: PBC vs PSC >Okay, the reason why I am wondering if I don't have PSC is because an ERCP is >the key way of diagnosing this disease. When my Dr. got the results of my >first biopsy in Jan of 97, it said that it looked like the early stages of >PSC. He did an ERCP to confirm the diagnosis, and my bile ducts looked >GREAT!!!! (this is still with having elevated liver enzymes), when I had the >liver wedge biopsy done in Aug. 98 the hospital pathology, and an independant >Liver pathologist both said it was PSC. So, I am wondering what the ERCP >will show when I have it done. Maybe it is just wishful thinking..but I'm >having a hard time swallowing this diagnosis. And, at my last Dr's appt. my >Dr. wouldn't say " Yes, I am positive that you have this disease " , he said >that we could just wait and see what happened, to know for sure if it was >PSC. So, even though I have had 3 diagnosis of PSC, it seems strange that it >wouldn't have shown up on the ERCP. >Hope this wasn't too confusing. >Love, > > >------------------------------------------------------------------------ >MyPoints-Free Rewards When You're Online. >Start with up to 150 Points for joining! >http://clickhere./click/805 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Hi guys! I have been told by every doctor that I have seen that high LFT's are indeed a sign of liver disease (of course we all know that by now), but not everyone has high LFT's, not everyone will become jaundice, not everyone will itch, not everyone will swell, not everyone will have pain, not everyone will get osteoarthritis, etc., etc. Several TX's have been performed on patients with normal LFT's (I mean all of the LFT's that everyone is familiar with and several aspects of the blood work that aren't so well known). This is indeed a " wait and see " situation with us that we cannot basically do anything about. It is very frustrating, but on the other hand we have time to do whatever, our families and friends have time to adjust to this. Hugs, Biddy Re: PBC vs PSC >> > Date: Wed, 8 Sep 1999 01:04:07 EDT >> > >> > Okay, the reason why I am wondering if I don't have PSC is >> > because an ERCP >> > is >> > the key way of diagnosing this disease. When my Dr. got the >> > results of my >> > first biopsy in Jan of 97, it said that it looked like the >> > early stages of >> > PSC. He did an ERCP to confirm the diagnosis, and my bile >> > ducts looked >> > GREAT!!!! (this is still with having elevated liver enzymes), >> > when I had >> > the >> > liver wedge biopsy done in Aug. 98 the hospital pathology, and >> > an >> > independant >> > Liver pathologist both said it was PSC. So, I am wondering >> > what the ERCP >> > will show when I have it done. Maybe it is just wishful >> > thinking..but I'm >> > having a hard time swallowing this diagnosis. ... >> > Love, >> > >> >> __________________________________________________ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 1999 Report Share Posted September 11, 1999 , Have you asked your doctors for written reports of each test done? You have a right to copies of their reports. 's doctors give us typed/computer printed reports for each test done that indicates the " Findings " or description of what they saw, and their " Impression " of what the findings indicate. It states what is typical of a given disease, what is asymptomatic, etc. It's very informative. I don't always think 's doctor wants to fine detail everything verbally. I think he's afraid his news will scare us or something. But when you get a written report, you get the facts and the doctor doesn't have to deal with the emotional end of it. If you haven't gotten written reports, I would request them for every procedure you've had done. And don't be afraid to tell your doctor that you don't understand how they can be so sure about the PSC diagnosis when they reported bile ducts in great condition. You deserve to know what's going on. Good luck. Mother of (7) PSC & ADHD Re: PBC vs PSC > Okay, the reason why I am wondering if I don't have PSC is because an ERCP is > the key way of diagnosing this disease. When my Dr. got the results of my > first biopsy in Jan of 97, it said that it looked like the early stages of > PSC. He did an ERCP to confirm the diagnosis, and my bile ducts looked > GREAT!!!! (this is still with having elevated liver enzymes), when I had the > liver wedge biopsy done in Aug. 98 the hospital pathology, and an independant > Liver pathologist both said it was PSC. So, I am wondering what the ERCP > will show when I have it done. Maybe it is just wishful thinking..but I'm > having a hard time swallowing this diagnosis. And, at my last Dr's appt. my > Dr. wouldn't say " Yes, I am positive that you have this disease " , he said > that we could just wait and see what happened, to know for sure if it was > PSC. So, even though I have had 3 diagnosis of PSC, it seems strange that it > wouldn't have shown up on the ERCP. > Hope this wasn't too confusing. > Love, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 1999 Report Share Posted September 11, 1999 Jodi, I didn't think that PSC & PBC were related like that. They are both immune disorders but I haven't head of anybody having both. Isn't it normally that you get one or the other? Mother of (7) PSC & ADHD Re: Fwd: PBC vs PSC > Thank you, Biddy. Now, does PSC always lead to PBC? I'd never heard of PBC > before coming to this group. (Of course, I'd never heard of PSC until my > son was diagnosed.) > Jodi > Jodi Rhoades, 's Mom > (age 9 - diagnosed with PSC 6-99) > > " For surely I know the plans I have for you, says the Lord, plans for your > welfare and not for harm, to give you a future with hope. " 29:11 > > > > Reply-To: egroups > To: <egroups> Quote Link to comment Share on other sites More sharing options...
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