Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 Thanks! Subject: RE: Re: Just DiagnosedTo: Date: Sunday, July 20, 2008, 5:52 AM I am not a regular commenter or poster on this site, but reading your presentation sounds just like my husband's case.He was first diagnosed with PSC after he had an episode of jaundice. No pain, no other symptoms. This was 12 years ago.It took 3 doctors to definitively diagnose him. He takes Actigall daily, and has had regular ERCPs w/balloon dilatation of his bile ducts.It has been 12 great years, with minimal to no episodes of cholangitis. He hardly ever misses a day of work, only one a year after the ERCP. We feel very blessed. His gastro sees him 1x a year for the ERCP. (used to be 2x a year)His blood work fluctuates, but functionally he is doing great. We have recently explored changing diet to minimize any stresson his body and he is currently staying away from dairy, egg, wheat and corn. Pretty restrictive, but it seems to be helping. This disease seems to be quite varied on how it manifests in people. My husband was 34 when he was first diagnosed, he is now 47.We try very hard to stay focused on the present, enjoy and appreciate the moment and not worry about tomorrow. I hope this message gives you a more optomistic perspective. Kate Piazzi To: @ yahoogroups. comFrom: grahammilligan@ yahoo.comDate: Sat, 19 Jul 2008 23:23:50 +0000Subject: Re: Just Diagnosed HiWelcome to the group.I am sure there will be more PSC's along to welcome you.My main message is 'YOU ARE NOT ALONE WITH THIS DISEASE'.There is so much information and support available through this discussion board. Also http://www.psc- literature. org/for literature about PSC. http://www.pscpartn ers.org/for information about PSC Partners Seeking a Cure Foundation a nonprofit foundation that endeavors to find a cure for Primary Sclerosing CholangitisBest wishesfrom at the bottom of the world in New Zealand> Can you direct me on what to expect, I guess I am in first stage. Is > there a time limit when it goes into 2nd, third and four stages? My > doctor wants to see me every 6 months, I do blood every 6 months and I > am taking Atigall. Should I be doing something else?> > I am so confused! and lost! I would appreciate some guidance from > those of us fighting this disease. > > Thanks> AJWisdom > California> Quote Link to comment Share on other sites More sharing options...
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