My husband was recently dial with PSC. As of now he has no symptoms except for high liver enzymes. We are searching for the best place to be seen by a liver specialist. Any suggestions? We are willing to travel the US to find one to treat this terrible disease.
Top places to check out are Mayo Clinic, Cleveland Clinic, Mass General, & Johns Hopkins. Do your research and best of luck to you!
I am sorry you and your husband have gotten this bad news. As a person who has lived for 13 years, the best advice I can give you is there is no proven treatment for PSC. A PSC diagnosis is not the beginning of a fight, it is usually the beginning of a marathon.
The best place to go to learn more about your husband’s PSC is Mayo Clinic in Minnesota.
I did not have a good experience a Mayo in Scottsdale…could not diagnose or offer anything other than the see this very very rarely. I had a very satisfying experience at Johns Hopkins. After spending 1.5 years trying to find why my counts were 5 times normal, he was able to diagnose my problem by merly reviewing my prior records. Highly regarded and experienced doctor…he was recommded to me by an Ingernal Med… doctor that worked at JH for 17 years. i was told that this specialist always was successful. He did an successful ERCP with a stint…no complications.
There is a new medicine called norUrso,mit is in the first Clinical phase, but has allready shown interesting results. May be it will be on the market in some years, hope so! You can read this link, and google norUrso for more info.
http://www.sciencedaily.com/releases/2013/02/130226081012.htm
Espen Bunæs said:
There is a new medicine called norUrso,mit is in the first Clinical phase, but has allready shown interesting results. May be it will be on the market in some years, hope so! You can read this link, and google norUrso for more info.
http://www.sciencedaily.com/releases/2013/02/130226081012.htmHello everybodythe actual status of the study may be found here: https://www.clinicaltrialsregister.eu/ctr-search/trial/2011-002754-...regards to everybodyRippi's husband(she told me to give this infomation to the forum)
Thanks, this is great!
We had a BAD experience at John Hopkins with an old geezer of a doctor. Last year he told my husband there was nothing wrong with him, and he just had gall stones... Went to Hershey Medical Center and that is where he got a competent doctor that diagnosed him with PSC. I will never go back to Hopkins..... We are planning on moving to Homosassa, FL to be near my mother, and also so Wayne can get into Mayo clinic..
Thank you
Thank you for your replies. Is there a certain dr at Hopkins & Mayo we should ask for should we decide to go to either one?
If you are living in Canada,you might also contact::
Dr. Morris Sherman, Division of Gastroenterology, Toronto General Hospital,.
or the Canadian Liver Foundation.
This is the old geezer at John Hopkins in Baltimore, MD that just blew my husband off last year and said it was just gallstones, nothing wrong with him, and he didn't need to see him any more. Bad part is he is supposed to specialize in PSC along with other things.......
Esteban Mezey, MD
Chief of Hepatology
Professor of Medicine
Professor of Medicine
Titles
- Chief of Hepatology
- Professor of Medicine
Centers & Institutes
- Comprehensive Transplant Center
Expertise
Clinical Gastroenterology, Digestive Diseases, Elevated Liver Tests, Fatty Liver, Gastroenterology, Hemochromatosis, Hepatitis, Jaundice, Liver Cancer, Liver Disease, Liver Mass, Liver Test Abnormalities, Liver Transplant, Nonalcoholic Steatohepatitis, Sclerosing Cholangitis
Research Interests
Liver fibrosis
whitewolf said:
This is the old geezer at John Hopkins in Baltimore, MD that just blew my husband off last year and said it was just gallstones, nothing wrong with him, and he didn't need to see him any more. Bad part is he is supposed to specialize in PSC along with other things.......
Esteban Mezey, MD
MaleChief of Hepatology
Professor of MedicineTitles
- Chief of Hepatology
- Professor of Medicine
Centers & Institutes
- Comprehensive Transplant Center
Expertise
Clinical Gastroenterology, Digestive Diseases, Elevated Liver Tests, Fatty Liver, Gastroenterology, Hemochromatosis, Hepatitis, Jaundice, Liver Cancer, Liver Disease, Liver Mass, Liver Test Abnormalities, Liver Transplant, Nonalcoholic Steatohepatitis, Sclerosing Cholangitis
Research Interests
Liver fibrosis
You asked for a name:
Dr David Kafonik. He was not only skilled but very personable. After numerous sessions with a variety of doctors who knew nothing about PSC, it was such a relief to talk to someone experienced and knowledgeable. Prior to the ERCP procedure his positive outlook, as well as his cheerful and helpful conversations, really relieved my concerns and stress. I had the exact opposite opinion of the doctor at Mayo in Scottsdale, who I went to before finding JH. She could not diagnose and only said something to the effect that my high liver count just happens sometime and they don’t know why. She offered no further information or recommendations of any kind.
Thank you all for the names of doctors both good & not so good. It is of great help to us when trying to research what to do. I appreciate your opinions