Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 . The doctors determe it throurg tests, Liver Biopsy and perhaps ECRP or MCRP. i've had PSC 19 years and I have never known what stage I am. Ignorence is Bliss (especially when they need to pock you with a needle for knowledge). Ian. (52) PSC 89 Hello all,Cannot tell you all how much of a life saver this group is before i found you i felt so alone with hardly any knowledge and running low on hope for a future. You have all changed that and I thank you. However I have noticed that a lot of you know what stage of the disease you are at, I however am completely in the dark. Can anyone give me an idea of how I can work out what stage i'm at? Thanks again (UK, PSC & UC 2002) -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 , Below is a copy of Mayo's staging system; however, according to my Dr.making a determination on the stage has a lot of factors and is not very accurate until you reach stage 4. I have small duct PSC my last biopsy rated me at stage 1; however, my doctor said I am most likely at stage 2 or 3. He said the discrepency when it comes to biopsies, especially with small duct PSC is related to the fact that if the biopsy was taken from a different location that had more problems then I would of been scored higher. My Dr. came to this conclussion because the biopsy reported that I had duct obliteration and " bead like webbing " throughout both lobes of my liver based on my last MRCP. He told me that there is often disagreement on the staging until stage IV when cirrhosis has developed because there is very little dispute over what it looks like. My take on this is that staging is not very important and I am where I am at in this disease process and all I can do is try and help it not to progress. This disease appears to be very individuallly based and doesn't appear to me to have " normal " or predictable progression patterns. Any way I hope this information is helpful. Stages of PSC Stage 1 — Fibrosis or scar tissue limited to a few spots called portal areas, little areas of " plumbing " or ductwork in the liver tissue Stage 2 — Fibrosis begins to appear outside the portal areas. The strands of fibrosis are not yet connected to each other. Stage 3 — Areas of fibrosis connecting to each other Stage 4 — Widespread, honeycomblike scarring known as cirrhosis http://www.mayoclinic.org/primary-sclerosing- cholangitis/diagnosis.html Dawn Can anyone give me an > idea of how I can work out what stage i'm at? > Thanks again > > (UK, PSC & UC 2002) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 , Below is a copy of Mayo's staging system; however, according to my Dr.making a determination on the stage has a lot of factors and is not very accurate until you reach stage 4. I have small duct PSC my last biopsy rated me at stage 1; however, my doctor said I am most likely at stage 2 or 3. He said the discrepency when it comes to biopsies, especially with small duct PSC is related to the fact that if the biopsy was taken from a different location that had more problems then I would of been scored higher. My Dr. came to this conclussion because the biopsy reported that I had duct obliteration and " bead like webbing " throughout both lobes of my liver based on my last MRCP. He told me that there is often disagreement on the staging until stage IV when cirrhosis has developed because there is very little dispute over what it looks like. My take on this is that staging is not very important and I am where I am at in this disease process and all I can do is try and help it not to progress. This disease appears to be very individuallly based and doesn't appear to me to have " normal " or predictable progression patterns. Any way I hope this information is helpful. Stages of PSC Stage 1 — Fibrosis or scar tissue limited to a few spots called portal areas, little areas of " plumbing " or ductwork in the liver tissue Stage 2 — Fibrosis begins to appear outside the portal areas. The strands of fibrosis are not yet connected to each other. Stage 3 — Areas of fibrosis connecting to each other Stage 4 — Widespread, honeycomblike scarring known as cirrhosis http://www.mayoclinic.org/primary-sclerosing- cholangitis/diagnosis.html Dawn Can anyone give me an > idea of how I can work out what stage i'm at? > Thanks again > > (UK, PSC & UC 2002) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 , Below is a copy of Mayo's staging system; however, according to my Dr.making a determination on the stage has a lot of factors and is not very accurate until you reach stage 4. I have small duct PSC my last biopsy rated me at stage 1; however, my doctor said I am most likely at stage 2 or 3. He said the discrepency when it comes to biopsies, especially with small duct PSC is related to the fact that if the biopsy was taken from a different location that had more problems then I would of been scored higher. My Dr. came to this conclussion because the biopsy reported that I had duct obliteration and " bead like webbing " throughout both lobes of my liver based on my last MRCP. He told me that there is often disagreement on the staging until stage IV when cirrhosis has developed because there is very little dispute over what it looks like. My take on this is that staging is not very important and I am where I am at in this disease process and all I can do is try and help it not to progress. This disease appears to be very individuallly based and doesn't appear to me to have " normal " or predictable progression patterns. Any way I hope this information is helpful. Stages of PSC Stage 1 — Fibrosis or scar tissue limited to a few spots called portal areas, little areas of " plumbing " or ductwork in the liver tissue Stage 2 — Fibrosis begins to appear outside the portal areas. The strands of fibrosis are not yet connected to each other. Stage 3 — Areas of fibrosis connecting to each other Stage 4 — Widespread, honeycomblike scarring known as cirrhosis http://www.mayoclinic.org/primary-sclerosing- cholangitis/diagnosis.html Dawn Can anyone give me an > idea of how I can work out what stage i'm at? > Thanks again > > (UK, PSC & UC 2002) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 Stages of PSC Stage 1 — Fibrosis or scar tissue limited to a few spots called portal areas, little areas of " plumbing " or ductwork in the liver tissue Stage 2 — Fibrosis begins to appear outside the portal areas. The strands of fibrosis are not yet connected to each other. Stage 3 — Areas of fibrosis connecting to each other Stage 4 — Widespread, honeycomblike scarring known as cirrhosis This is helpful, I have not yet had a liver biopsy. So far, my stages have just been denial, anger, grief and acceptance. ee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 Stages of PSC Stage 1 — Fibrosis or scar tissue limited to a few spots called portal areas, little areas of " plumbing " or ductwork in the liver tissue Stage 2 — Fibrosis begins to appear outside the portal areas. The strands of fibrosis are not yet connected to each other. Stage 3 — Areas of fibrosis connecting to each other Stage 4 — Widespread, honeycomblike scarring known as cirrhosis This is helpful, I have not yet had a liver biopsy. So far, my stages have just been denial, anger, grief and acceptance. ee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 Stages of PSC Stage 1 — Fibrosis or scar tissue limited to a few spots called portal areas, little areas of " plumbing " or ductwork in the liver tissue Stage 2 — Fibrosis begins to appear outside the portal areas. The strands of fibrosis are not yet connected to each other. Stage 3 — Areas of fibrosis connecting to each other Stage 4 — Widespread, honeycomblike scarring known as cirrhosis This is helpful, I have not yet had a liver biopsy. So far, my stages have just been denial, anger, grief and acceptance. ee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 Hi, Yeah this really does help. On my last ultrasound the results came back that my liver had a course echo-texture has anyone else had this? Regards (UK, PSC & UC 2002) > > > Stages of PSC > Stage 1 — Fibrosis or scar tissue limited to a few spots called > portal areas, little areas of " plumbing " or ductwork in the liver > tissue > Stage 2 — Fibrosis begins to appear outside the portal areas. The > strands of fibrosis are not yet connected to each other. > Stage 3 — Areas of fibrosis connecting to each other > Stage 4 — Widespread, honeycomblike scarring known as cirrhosis > > > This is helpful, I have not yet had a liver biopsy. So far, my stages > have just been denial, anger, grief and acceptance. > > ee > Quote Link to comment Share on other sites More sharing options...
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