Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 I went for a second opinion and I suggest to all newly diagnosed to do that. The only thing you have to be prepared for is what happens if the other doctor doesn't agree with the first. But then again, you have to do what you feel is right for you. Mojo second opinions > My question is has anyone ever gone on second opinions? I know that > everything that my Rhuemie is doing is right on protocol but my > husband who is in the medical field and other family members keep > telling me that I need to see someone else. I started Immuran this > week and uped my Steroids back to 20 mg and cannot seem to get > relief im my joints or lungs. My husband seems to think like most > people that because I am taking a medicine I should get better. Is > it worth it to try and go to a big medical center and see someone > who is involved in research? I know the one book about Lupus that I > read had a whole lot of tests tin it that I have never had.I just > feel really alone in this. I am not sure what to do and find it > really frustrating that I am constantly exhasuted. I have three kids > that require all of my energy. I get them on thier buses pick up the > house and maybe get one load of laundry done and I have to lay down > until I pick them up and start driving them to all of their > functions. Things have to change but I am not sure how or what and > I am really nervous about the summer with them all home > > > > > " The LUPIES Store " Come check out our store... > http://www.cafepress.com/thelupies > > " The LUPIES Web Page " > http://www.itzarion.com/lupusgroup.html > > " The LUPIES online photo albums! " > Check out what your fellow Lupies look like... > http://www.picturetrail.com/lupies > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 I went for a second opinion and I suggest to all newly diagnosed to do that. The only thing you have to be prepared for is what happens if the other doctor doesn't agree with the first. But then again, you have to do what you feel is right for you. Mojo second opinions > My question is has anyone ever gone on second opinions? I know that > everything that my Rhuemie is doing is right on protocol but my > husband who is in the medical field and other family members keep > telling me that I need to see someone else. I started Immuran this > week and uped my Steroids back to 20 mg and cannot seem to get > relief im my joints or lungs. My husband seems to think like most > people that because I am taking a medicine I should get better. Is > it worth it to try and go to a big medical center and see someone > who is involved in research? I know the one book about Lupus that I > read had a whole lot of tests tin it that I have never had.I just > feel really alone in this. I am not sure what to do and find it > really frustrating that I am constantly exhasuted. I have three kids > that require all of my energy. I get them on thier buses pick up the > house and maybe get one load of laundry done and I have to lay down > until I pick them up and start driving them to all of their > functions. Things have to change but I am not sure how or what and > I am really nervous about the summer with them all home > > > > > " The LUPIES Store " Come check out our store... > http://www.cafepress.com/thelupies > > " The LUPIES Web Page " > http://www.itzarion.com/lupusgroup.html > > " The LUPIES online photo albums! " > Check out what your fellow Lupies look like... > http://www.picturetrail.com/lupies > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 How do you feel about he dr you are seeing now? Have you asked him about the other tests? It never hurts to get a second opinion. I know when I had my tubes tied I had 5 opinions! Four out of the five said I should have it done so I did. What does your husband do? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 How do you feel about he dr you are seeing now? Have you asked him about the other tests? It never hurts to get a second opinion. I know when I had my tubes tied I had 5 opinions! Four out of the five said I should have it done so I did. What does your husband do? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 I think quite a few of us have seen more than one doctor to get opinions on the diagnosis. I started with small duct PSC which is harder to diagnosis - the ERCP is negative but otherwise everything else points to PSC including medical history, blood tests, symptoms, biopsy, etc. The ERCP only visualizes the larger bile ducts, not the small ducts. So it's kind of a "soft" diagnosis that doesn't feel definitive, even though I pretty much knew in my gut that I had PSC. I still hoped I was wrong. It took about 6 years for a more definitive diagnosis. I switched hepatologists, but then switched back to the first hepatologist (the 2nd hepatologist was sure there was NOTHING wrong with my liver). I've since been diagnosed with both PSC & autoimmune hepatitis.Anyway, you should never feel bad about getting another opinion. The Mayo clinic would be a great place to go for a 2nd opinion, if that's a possibility for you. There are 3 Mayo clinics in the US: Rochester, MN; ville, FL; and another one in Arizona. Dr. Lindor is probably the premier PSC doc in the US and he is at the Mayo in Rochester, MN. Marie To: ; pscmoms From: lilstef23@...Date: Sun, 22 Jun 2008 00:51:27 -0400Subject: second opinions Has anyone in here gotten a second opinion on the diagnosis? We only got 1 and i think we need an another.Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. The i’m Talkathon starts 6/24/08. For now, give amongst yourselves. Learn More Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 What can PSC be misconstrued as? Is there something else less severe that it gets mixed up with? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 > What can PSC be misconstrued as? Is there something else less severe that it gets mixed up with? Dr. Chapman has made a list of causes of sclerosing cholangitis that are " secondary " to other diseases/conditions, see Table 1 of: Chapman R, Cullen S 2008 Etiopathogenesis of primary sclerosing cholangitis. World J. Gastroenterol. 14: 3350-3359. http://www.wjgnet.com/1007-9327/14/3350.pdf These " secondary " causes are also reviewed in: Abdalian R, Heathcote EJ 2006 Sclerosing cholangitis: a focus on secondary causes. Hepatology 44: 1063-1074. http://www.ncbi.nlm.nih.gov/pubmed/17058222 " Well-described causes of SSC include intraductal stone disease, surgical or blunt abdominal trauma, intra-arterial chemotherapy, and recurrent pancreatitis. However, a wide variety of other associations have been reported recently, including autoimmune pancreatitis, portal biliopathy, eosinophillic and/or mast cell cholangitis, hepatic inflammatory pseudotumor, recurrent pyogenic cholangitis, primary immune deficiency, and AIDS-related cholangiopathy. " I think that all of these are pretty serious, but the one that may be the least serious is sclerosing cholangitis associated with autoimmune pancreatitis which seems to respond well to corticosteroids. This type is usually associated with elevated IgG4. Dr. Chapman's article above has a section on " Autoimmune pancreatitis (IgG4 associated sclerosing cholangitis) " and notes " Correct diagnosis is important as AIP responds well to corticosteroid therapy and tends to have a significantly better outcome than PSC " . Best regards, Dave (father of (23); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
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