Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 Hi Barb Thanks for that, I see it the poll as a sort of a census. That in the first week of 2009 this is the state of the PSC discussion group, (wouldn't it be great if all 1,600 were able to respond). I agree, as you say, that we cannot count on it, as I was diagnosed 3 years ago, the specialist said he would not be surprised if I had PSC for 15 to 20 years! > > I hope no one is planning their future or banking on the results of any > of these polls. While they may be somewhat helpful, you can't count on > your course following any information found here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 -----Original Message----- I was diagnosed 3 years ago, the specialist said he would not be surprised if I had PSC for 15 to 20 years! Hi , Was he able to tell you what stage you were in at diagnosis? Barb in Texas - Together in the Fight - Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 -----Original Message----- I was diagnosed 3 years ago, the specialist said he would not be surprised if I had PSC for 15 to 20 years! Hi , Was he able to tell you what stage you were in at diagnosis? Barb in Texas - Together in the Fight - Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 Hi Barb. Best wishes for a great 2009. No, he didn't say and I didn't ask what stage I was. I feel pretty healthy and I think if I was told I was stage 3 or 4 it might negatively affect how I feel about the state of my health. So I am working on the principle that I am seen every 6 months and they can do the worrying about how ill (or not) I am and I will do everything possible to remain up to date with what is happening in the PSC world and try to remain healthy. Sounds like a good idea??? Thanks > Hi , > Was he able to tell you what stage you were in at diagnosis? > > Barb in Texas - Together in the Fight - Whatever it Takes! > Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 The best way to tell your stage of PSC from what I have read is through a biopsy, but even that is variable because different parts of the liver can be worse or better then other parts. I also think but have found nothing to confirm this that there si a diffence is symptoms between small duct PSC and large Duct PSC. I cannot figure out how to get the poll section of this group to allow us to write in answers, which I think would help to clarify some things. If some one knows how to do that it might be helpful. Dawn > > > Hi Barb. > > Best wishes for a great 2009. > > > > No, he didn't say and I didn't ask what stage I was. I feel pretty > > healthy and I think if I was told I was stage 3 or 4 it might > > negatively affect how I feel about the state of my health. So I am > > working on the principle that I am seen every 6 months and they can > > do the worrying about how ill (or not) I am and I will do everything > > possible to remain up to date with what is happening in the PSC world > > and try to remain healthy. > > Sounds like a good idea??? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 The only way to stage PSC is with a biopsy; you are correct in that it only shows what the biopsy “gets”. The database function is the one way to get actual text in a response. An example is the PSC Ethnic Heritage database. There’s a limit to how many columns you can have. Arne From: [mailto: ] On Behalf Of mdwblaze The best way to tell your stage of PSC from what I have read is through a biopsy, but even that is variable because different parts of the liver can be worse or better then other parts… Quote Link to comment Share on other sites More sharing options...
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