Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Since as far back as 2004 our son has had elevated liver enzymes. The subsequent tests have shown he has an enlarged liver and an enlarged spleen as well. At that time he was evaluated by a " top " hepatologist who's response was for him to lose weight and he would be fine. For the last 2 years he has experienced multiple episodes of excessive fatigue, with LFT'S that are higher than they have ever been, including elevated billirubin levels. In Feruary he had a liver biopsy at Mt. Sinai in NYC that the pathologist says shows PSC. He then had an MRI/MRCP that the new doctor said would confirm the diagnosis. Now we are told that since he is not a textbook case they cannot say with 100% certainty if it is PSC or PBC. Since this is his first year of college, we want him to be able to enjoy what should be a carefree time. So we are looking for a doctor who has extensive experience with PSC. We are willing to travel where we need to as long as we can be sure the doctor has extensive knowledge of PSC since it has become all too apparent that all hepatologists are not necessarily well versed in PSC. Thank you in advance for any recommendations and referrals you can share with us and thanks for listening. Quote Link to comment Share on other sites More sharing options...
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