Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 Even when you know what stage you are in the disease is still unpredictable. My husband has been in stage 4 for 7 years now. They still are not sure how much longer he has until transplant. His MELD score fluctuates every time they drain him. Patti To: Sent: Thursday, November 20, 2008 9:20:00 AMSubject: Re: Stages?????????? ,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 PSCStage 1 — Fibrosis or scar tissue limited to a few spots called portal areas, little areas of "plumbing" or ductwork in the liver tissueStage 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 otherStage 4 — Widespread, honeycomblike scarring known as cirrhosishttp://www.mayoclin ic.org/primary- sclerosing-cholangitis/ diagnosis. htmlDawnCan 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...
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