Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 I'm just wondering: has anyone here been diagnosed with PSC without having ANY symptoms whatsoever? Not even abnormal LFTs? My only " symptom " is a dilated bile duct discovered during a test done for something else altogether. I know it's a shot in the dark, and maybe a little bit of denial, but I'm still questioning this diagnosis. (I do have an appt with my doc next Tuesday to discuss this further, along with a whole slew of other questions I have). I'm just wondering what experiences you all have had. Thanks! Suzanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 Hi Suzanna, My husband Larry had no outward symptoms of PSC at all before his diagnosis. It was only the elevated LFT's, picked up during a life insurance application exam, which necessitated the ERCP. The PSC diagnosis was a shocker. (Also, the resulting life insurance cost -- $1280/mo.!) Still, we're grateful to know what to expect for the near future -- it would have been horrible to find out years later when nothing could be done. Best wishes to you and your family! wife of Larry (PSC 2/07, ERCP's 2/07, 10/07; pancreatitis 10/07) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 Hi Suzanna, My husband Larry had no outward symptoms of PSC at all before his diagnosis. It was only the elevated LFT's, picked up during a life insurance application exam, which necessitated the ERCP. The PSC diagnosis was a shocker. (Also, the resulting life insurance cost -- $1280/mo.!) Still, we're grateful to know what to expect for the near future -- it would have been horrible to find out years later when nothing could be done. Best wishes to you and your family! wife of Larry (PSC 2/07, ERCP's 2/07, 10/07; pancreatitis 10/07) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 > Suzanna >hi my daughter was just tired all the time when she first showed elevated liver enzymes. it took them 6 months to diagnose her. then 6 months later she became jaundiced. she also had a strictire of one of the small ducts. this is what started the first jaundice episode.the dr. told her that it would take 20 yrs before she would need a transplant. that was in 1999. she has more frequent episodes recently . she was diagnosed with cirrhosis in 2003, stage 4.she continues to work and lead a full life in between episodes.she would love to have children, but the hep dr said that it would be nearly impossible to get pregnant and if she did she would not likely carry the babby to term. he told her that after the transplant she would be able to have children.i keep reminding her not to worry so much about tomorrow that she forgets to live today. one day at a time one issue at a time hope you remain well.c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2007 Report Share Posted November 9, 2007 I was initially pushing for an ERCP and am now glad the Dr didn't go ahead with it. After reading about it online, it didn't seem like it was such a big deal. I did see some statistics regarding risk of cholangitis and pancreatitis, but brushed them off. Some of the anecdotal stuff I have read, though, makes me a lot more concerned about having that test done unless there's a need for a stent or other physical manipulation of the duct. On another note, regarding elevated LFTs: were they really high, moderately high or slightly high when seeking diagnosis? > > > > Hi Suzanna, > A lovely lady in her early 60s, (PLEASE NOTE HER AGE!!) called > Helen in New Zealand (like me she does not have inflamatory bowel > disease), who is not part of this group, I have got to know her > through a small New Zealand and Australian group, has a history very > much like yours. From memory she was hospitalised about 3 years ago > for something else , it was found she had high LFTs and the > narrowing of her bile ducts was found in an MRI. She was put on > antibiotics and the LFT's came back to normal and apart from one > bacterial infection she feels well. We also have a man in the group > who is suffering terribly from PSC/colitis and its interesting that > when he and Helen got to together they discussed their family history > and found that... (the following has been taken from a posting in > our groupl from Helen) 'both our mothers died of cancer of the bile > duct our doctors think they both had PSC but never knew - the cancer > killed them before the symptoms became apparent. I know my mother > suffered from what she thought was indigestion. I now suspect some > of the discomfort was caused by PSC'. > Helen's specialist has told her that even though the 'Gold Standard' > for diagnosing PSC is with an ERCP, he will not do one on her as he > thinks that ERCP's can cause the disease to get worse more quickly > and he is quite happy keeping an watch on her liver through yearly > MRI's and blood tests. > Hope this helps. > Best wishes for your doctor's visit. > > Quote Link to comment Share on other sites More sharing options...
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