Guest guest Posted December 24, 2007 Report Share Posted December 24, 2007 Due to my insurance, I have had to go and see another gastroenterologist. During my first visit, he looked at my latest lab work and told me that he had never seen anyone with PSC who had managed to return to normal lab results. He said the results come down but he has never seen them normal. He then started talking about how hard PSC is to diagnose and that he wanted to review my records to see if the proper diagnoses was made. When he learned that I had ERCP's on multiple occasions, he said that perhaps I was just one of the rare few who progress much slower than others (not his exact words but close enough). It isn't that I am not thrilled at the idea of not having PSC but I have already been diagnosed with it by two other doctors. The doctor that I am leaving I trust completely. I would never have left if not for the insurance. I guess it is just fear. It has taken me six years to really accept this illness and I'm a little afraid of having to start over at square one because I get excited about this. I have always given my former doc a hard time about " mind over matter " . He has always said that I couldn't control these diseases and I have always said that you never know what the mind and body are capable of. I have done everything in my power to get well and maybe its worked by some miracle of God. I just don't know. I am suppose to return in March and see what he thinks. Have any of you who have had PSC for a while actually had normal liver function tests? I have seen my ERCP/MRI/CT, etc results and they showed wide spread damage, tho not severe. in TX PSC '01 Merry Christmas to Everyone =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Wilkinson, ORG:;Human Resources EMAIL;WORK;PREF;NGW:lindawilkinson@... N:Wilkinson; END:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2007 Report Share Posted December 24, 2007 , My LFTs are normal the last year and a half after a balloon dilatation and starting high dose UDCA. There are a few more people on the forum that had this happen. Regards, Chaim Boermeester, Israel. From: [mailto: ] On Behalf Of Wilkinson Sent: Monday, December 24, 2007 14:43 To: Subject: News Due to my insurance, I have had to go and see another gastroenterologist. During my first visit, he looked at my latest lab work and told me that he had never seen anyone with PSC who had managed to return to normal lab results. He said the results come down but he has never seen them normal. He then started talking about how hard PSC is to diagnose and that he wanted to review my records to see if the proper diagnoses was made. When he learned that I had ERCP's on multiple occasions, he said that perhaps I was just one of the rare few who progress much slower than others (not his exact words but close enough). It isn't that I am not thrilled at the idea of not having PSC but I have already been diagnosed with it by two other doctors. The doctor that I am leaving I trust completely. I would never have left if not for the insurance. I guess it is just fear. It has taken me six years to really accept this illness and I'm a little afraid of having to start over at square one because I get excited about this. I have always given my former doc a hard time about " mind over matter " . He has always said that I couldn't control these diseases and I have always said that you never know what the mind and body are capable of. I have done everything in my power to get well and maybe its worked by some miracle of God. I just don't know. I am suppose to return in March and see what he thinks. Have any of you who have had PSC for a while actually had normal liver function tests? I have seen my ERCP/MRI/CT, etc results and they showed wide spread damage, tho not severe. in TX PSC '01 Merry Christmas to Everyone =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2007 Report Share Posted December 24, 2007 I thought that was the case. A few years ago, my doctor had to go in and open up the CBD. He placed a stent for a couple of weeks and I have not had problems since then. This doctor says he has 4 or 5 other PSC patients which surprises me in an area as small as East Texas. I wish that I could just stay with the doctor that I trust. I guess I will just see what he says in March. Thanks. >>> " Chaim Boermeester " 12/24/2007 7:24 AM >>> , My LFTs are normal the last year and a half after a balloon dilatation and starting high dose UDCA. There are a few more people on the forum that had this happen. Regards, Chaim Boermeester, Israel. _____ From: [mailto: ] On Behalf Of Wilkinson Sent: Monday, December 24, 2007 14:43 To: Subject: News Due to my insurance, I have had to go and see another gastroenterologist. During my first visit, he looked at my latest lab work and told me that he had never seen anyone with PSC who had managed to return to normal lab results. He said the results come down but he has never seen them normal. He then started talking about how hard PSC is to diagnose and that he wanted to review my records to see if the proper diagnoses was made. When he learned that I had ERCP's on multiple occasions, he said that perhaps I was just one of the rare few who progress much slower than others (not his exact words but close enough). It isn't that I am not thrilled at the idea of not having PSC but I have already been diagnosed with it by two other doctors. The doctor that I am leaving I trust completely. I would never have left if not for the insurance. I guess it is just fear. It has taken me six years to really accept this illness and I'm a little afraid of having to start over at square one because I get excited about this. I have always given my former doc a hard time about " mind over matter " . He has always said that I couldn't control these diseases and I have always said that you never know what the mind and body are capable of. I have done everything in my power to get well and maybe its worked by some miracle of God. I just don't know. I am suppose to return in March and see what he thinks. Have any of you who have had PSC for a while actually had normal liver function tests? I have seen my ERCP/MRI/CT, etc results and they showed wide spread damage, tho not severe. in TX PSC '01 Merry Christmas to Everyone =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc. <http://www.etmc.org/mail/> org/mail/ Thank you. =========================================================== =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Wilkinson, ORG:;Human Resources EMAIL;WORK;PREF;NGW:lindawilkinson@... N:Wilkinson; END:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2007 Report Share Posted December 24, 2007 Same here (since spring 2001). My gallbladder was also removed that fall. Arne 56 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ >>> " Chaim Boermeester " <cboer@... <mailto:cboer%40rugged.com> > 12/24/2007 7:24 AM >>> , My LFTs are normal the last year and a half after a balloon dilatation and starting high dose UDCA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2007 Report Share Posted December 24, 2007 Well, I'm not going to get my hopes up that the PSC has disappeared. Merry Christmas! >>> " A & J M " 12/24/2007 9:54 AM >>> Same here (since spring 2001). My gallbladder was also removed that fall. Arne 56 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ >>> " Chaim Boermeester " <cboer@... <mailto:cboer%40rugged.com> > 12/24/2007 7:24 AM >>> , My LFTs are normal the last year and a half after a balloon dilatation and starting high dose UDCA. =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Wilkinson, ORG:;Human Resources EMAIL;WORK;PREF;NGW:lindawilkinson@... N:Wilkinson; END:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2007 Report Share Posted December 24, 2007 , my LFTs are absolutely normal. Liver showed improvement on repeat MRCPs. Obviously, the course of this disease is different for each of us. I, for one, am counting my blessings. Merry Christmas to everyone who celebrates Christmas! Penny -- In , " Wilkinson " wrote: > > Have any of you who have had PSC for a while actually had normal liver function tests? I have seen my ERCP/MRI/CT, etc results and they showed wide spread damage, tho not severe. > in TX > PSC '01 > Merry Christmas to Everyone > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2007 Report Share Posted December 24, 2007 Yes, my LFTs have often gone back to normal. I still have PSC, AIH, etc. Perhaps you should find another doctor. I would get a hepatologist.Marie To: From: lindawilkinson@...Date: Mon, 24 Dec 2007 06:42:36 -0600Subject: News Due to my insurance, I have had to go and see another gastroenterologist. During my first visit, he looked at my latest lab work and told me that he had never seen anyone with PSC who had managed to return to normal lab results. He said the results come down but he has never seen them normal. He then started talking about how hard PSC is to diagnose and that he wanted to review my records to see if the proper diagnoses was made. When he learned that I had ERCP's on multiple occasions, he said that perhaps I was just one of the rare few who progress much slower than others (not his exact words but close enough). It isn't that I am not thrilled at the idea of not having PSC but I have already been diagnosed with it by two other doctors. The doctor that I am leaving I trust completely. I would never have left if not for the insurance. I guess it is just fear. It has taken me six years to really accept this illness and I'm a little afraid of having to start over at square one because I get excited about this. I have always given my former doc a hard time about "mind over matter". He has always said that I couldn't control these diseases and I have always said that you never know what the mind and body are capable of. I have done everything in my power to get well and maybe its worked by some miracle of God. I just don't know. I am suppose to return in March and see what he thinks. Have any of you who have had PSC for a while actually had normal liver function tests? I have seen my ERCP/MRI/CT, etc results and they showed wide spread damage, tho not severe. in TX PSC '01 Merry Christmas to Everyone =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== Share life as it happens with the new Windows Live. Share now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2007 Report Share Posted December 24, 2007 > Have any of you who have had PSC for a while actually had normal liver function tests? , My 22 year old daughter was diagnosed with small duct psc in 2003 and saw her LFT's drop to the normal range almost immediately after going on urso. This week she goes for her semi-annual blood draw....and we will say a little prayer those LFT's are obediently staying where they belong. Mom to Libby, psc '03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2007 Report Share Posted December 26, 2007 We when I was learning about URSO I asked my CVS pharmacist about any information on PSC and URSO, he found a research article and printed it out for me. It was on URSO and PBC,PSC. It said that being on urso sometimes brought LFT's back to the normal range, but in PSC did not really change the disease process like it seems to in PBC. > > Have any of you who have had PSC for a while actually had normal > liver function tests? > > , > My 22 year old daughter was diagnosed with small duct psc in 2003 and > saw her LFT's drop to the normal range almost immediately after going > on urso. This week she goes for her semi-annual blood draw....and we > will say a little prayer those LFT's are obediently staying where they > belong. > > Mom to Libby, psc '03 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2007 Report Share Posted December 27, 2007 When my GI first prescribed Urso, he told me it "slicks up" the bile ducts. The urso seems to thin out the bile so it moves easier, and forms less sludge which clogs up the ducts and it also discourages the formation of gall stones. It treats symptoms but not the disease process. The urso delays some of the damage done to the liver because the bile is moving out of the gall bladder rather then backing up into the liver. It also relieves the pain of blockages as it is doing for your son. It would be great to have a pill that would cure PSC, but since it is not understood exactly what causes PSC, that is not the case---YET. Take Care MizKitSee AOL's top rated recipes and easy ways to stay in shape for winter. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2007 Report Share Posted December 27, 2007 What I never understand is if the Urso is bringing the liver function tests to normal and stopping the pain in the right side, how is it that the disease is still progressing if there are no symptoms and liver function tests are normal. So, how will we know if the disease is progressing re: my 10 year old son who started taking Urso and instantly he pain was gone and LFT's returned to normal? Any clues? Stevie Lynn Gedgaudas-OStos " " " " Sent by: 12/26/2007 10:16 AM Please respond to To cc Subject Re: News We when I was learning about URSO I asked my CVS pharmacist about any information on PSC and URSO, he found a research article and printed it out for me. It was on URSO and PBC,PSC. It said that being on urso sometimes brought LFT's back to the normal range, but in PSC did not really change the disease process like it seems to in PBC. > > Have any of you who have had PSC for a while actually had normal > liver function tests? > > , > My 22 year old daughter was diagnosed with small duct psc in 2003 and > saw her LFT's drop to the normal range almost immediately after going > on urso. This week she goes for her semi-annual blood draw....and we > will say a little prayer those LFT's are obediently staying where they > belong. > > Mom to Libby, psc '03 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2007 Report Share Posted December 27, 2007 I understood that URSO allows the bile to move easier through the liver ducts and that is how it improves the LFT's but doesn't slow progression. I believe it thins the bile??? I don't really know about the pain because I have only recently starting having some pain but I guess the same idea would apply..................if the bile is thinner, then it flows easier and doesn't allow for the pain caused by the bile being thicker and harder to move. I am no expert. I really don't pay the attention to these things that I should (I am trying to improve in this area). There are others here that know their stuff! PSC '01 >>> " Stevie Gedgaudas " 12/27/2007 10:33 AM >>> What I never understand is if the Urso is bringing the liver function tests to normal and stopping the pain in the right side, how is it that the disease is still progressing if there are no symptoms and liver function tests are normal. So, how will we know if the disease is progressing re: my 10 year old son who started taking Urso and instantly he pain was gone and LFT's returned to normal? Any clues? Stevie Lynn Gedgaudas-OStos " " <heartrn45 (AT) yahoo (DOT) com> To Sent by: @yahoo cc groups.com Subject Re: News 12/26/2007 10:16 AM Please respond to @yahoo groups.com We when I was learning about URSO I asked my CVS pharmacist about any information on PSC and URSO, he found a research article and printed it out for me. It was on URSO and PBC,PSC. It said that being on urso sometimes brought LFT's back to the normal range, but in PSC did not really change the disease process like it seems to in PBC. > > Have any of you who have had PSC for a while actually had normal > liver function tests? > > , > My 22 year old daughter was diagnosed with small duct psc in 2003 and > saw her LFT's drop to the normal range almost immediately after going > on urso. This week she goes for her semi-annual blood draw....and we > will say a little prayer those LFT's are obediently staying where they > belong. > > Mom to Libby, psc '03 > =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Wilkinson, ORG:;Human Resources EMAIL;WORK;PREF;NGW:lindawilkinson@... N:Wilkinson; END:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2007 Report Share Posted December 27, 2007 I beleive tha only way to know how the disease is processing is with an ERCP or MRCP. My Hep doc at Baylor said it was rare to get an actual biopsy of the large bile ducts showing PSC, which mine did, she said it was just " luck " . Also remember this disease generally progresses slowly, so there can be no symptoms or change in symptoms for years. Just like the disease process is usually present for several years before any symptoms show up. Good luck to you and your son. PSC 5/2007 Listed > > > Have any of you who have had PSC for a while actually had normal > > liver function tests? > > > > , > > My 22 year old daughter was diagnosed with small duct psc in 2003 and > > saw her LFT's drop to the normal range almost immediately after going > > on urso. This week she goes for her semi-annual blood draw....and we > > will say a little prayer those LFT's are obediently staying where > they > > belong. > > > > Mom to Libby, psc '03 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2007 Report Share Posted December 27, 2007 Hi well I don't know if this helps any I was only diagnosed less than 2 yrs ago. MY Doctor said that the medicine is not a cure, it is to help reduce the swelling of the bile ductarea .. but remember i'm just learning this stuff myself... I hope this sheds a little light To: From: heartrn45@...Date: Thu, 27 Dec 2007 20:24:28 +0000Subject: Re: News I beleive tha only way to know how the disease is processing is with an ERCP or MRCP. My Hep doc at Baylor said it was rare to get an actual biopsy of the large bile ducts showing PSC, which mine did, she said it was just "luck". Also remember this disease generally progresses slowly, so there can be no symptoms or change in symptoms for years. Just like the disease process is usually present for several years before any symptoms show up. Good luck to you and your son. PSC 5/2007 Listed > > > Have any of you who have had PSC for a while actually had normal > > liver function tests? > > > > , > > My 22 year old daughter was diagnosed with small duct psc in 2003 and > > saw her LFT's drop to the normal range almost immediately after going > > on urso. This week she goes for her semi-annual blood draw....and we > > will say a little prayer those LFT's are obediently staying where > they > > belong. > > > > Mom to Libby, psc '03 > >> Don't get caught with egg on your face. Play Chicktionary! Check it out! Quote Link to comment Share on other sites More sharing options...
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