RE: Name of Doctor - Mayo Clinic, Rochester

[Guest guest]

If you are willing to travel, then I would suggest the Mayo Clinic in Rochester. You may be able to make an appointment from the Web site, or get the phone number and call for an appointment. The doctors to see that I have heard about are Lindor and Gores. Dr. Gores actually specializes in cancer of the bile ducts, so Dr. Lindor is probably your best bet.By the way, if it is small duct PSC, it is harder to diagnose with any certainty, but the trade-off is that the outcome is usually much better than with large duct PSC. Unfortunately, small duct PSC often becomes large duct PSC as the disease spreads throughout the liver and to the large ducts.Best of luck to you and your son. Marie

To: From: alexsmiracle13@...Date: Mon, 23 Mar 2009 20:57:08 +0000Subject: Name of Doctor

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.

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