Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 My "baby" is in her first year of college, as well - isn't it a pain? (We're guessing that she would have shown elevated liver levels from around the 2004/2005 - but they weren't checked. She's been itching like mad, off and on, since then. The real fatigue and brain fog hit this year for the first time.)I wish you luck, and will be interested to see the responses - we will also likely be looking for someone who really knows what they are doing. I just got done leading her GI doc to the diagnosis, since her LFT numbers were so low he didn't think anything serious was going on. He's good at what he does, but he has a bit of tunnel vision - and I want someone who doesn't reject non-traditional options (nutrition and non-traditional medicine included), as well as being on top of the latest traditional research.Did they tell you what the pathology found that led to the diagnosis of PSC? My daughter's biopsy showed (at least) the characteristic onion skin lesions, which was the basis of the diagnosis. Her MRCP was either "normal" (which we were originally told) or indeterminate with regard to PSC (which is what showed up on the hospital discharge papers after the biopsy. What we've been told is that it is PSC with small bile duct invovlement.Subject: Name of DoctorTo: Date: Monday, March 23, 2009, 4:57 PM 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...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 My "baby" is in her first year of college, as well - isn't it a pain? (We're guessing that she would have shown elevated liver levels from around the 2004/2005 - but they weren't checked. She's been itching like mad, off and on, since then. The real fatigue and brain fog hit this year for the first time.)I wish you luck, and will be interested to see the responses - we will also likely be looking for someone who really knows what they are doing. I just got done leading her GI doc to the diagnosis, since her LFT numbers were so low he didn't think anything serious was going on. He's good at what he does, but he has a bit of tunnel vision - and I want someone who doesn't reject non-traditional options (nutrition and non-traditional medicine included), as well as being on top of the latest traditional research.Did they tell you what the pathology found that led to the diagnosis of PSC? My daughter's biopsy showed (at least) the characteristic onion skin lesions, which was the basis of the diagnosis. Her MRCP was either "normal" (which we were originally told) or indeterminate with regard to PSC (which is what showed up on the hospital discharge papers after the biopsy. What we've been told is that it is PSC with small bile duct invovlement.Subject: Name of DoctorTo: Date: Monday, March 23, 2009, 4:57 PM 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...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Hi:I am in the same position as you since my spouse just got diagnosed. The names that seem to come up regularly as PS oriented specialists are Lindor at the Mayo Clinic Rochester and Marshall Kaplan in Boston. I joined the PSC partners for a cure and they highlight MDs who are doing research etc in this area. We are in NY. Who are you using in NYC? Best of luck.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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Hi:I am in the same position as you since my spouse just got diagnosed. The names that seem to come up regularly as PS oriented specialists are Lindor at the Mayo Clinic Rochester and Marshall Kaplan in Boston. I joined the PSC partners for a cure and they highlight MDs who are doing research etc in this area. We are in NY. Who are you using in NYC? Best of luck.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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Thank you so much for responding. When we went to Mt Sinai we didn't have a specific name, we were only told that, "The worst in Mt Sinai is better than the best in other places"We were assigned Dr Charissa Chang. We just don't get the feeling she has a great deal of experience with PSC. I had read about the Mayo clinic but I didn't know who to request so your input is a great help. Do you have a doctor in NY that you trust? We wish you and your family all the best. Theresa Subject: RE: Name of DoctorTo: @...Date: Monday, March 23, 2009, 11:45 PM Hi:I am in the same position as you since my spouse just got diagnosed. The names that seem to come up regularly as PS oriented specialists are Lindor at the Mayo Clinic Rochester and Marshall Kaplan in Boston. I joined the PSC partners for a cure and they highlight MDs who are doing research etc in this area. We are in NY. Who are you using in NYC? Best of luck. To: @ yahoogroups. comFrom: alexsmiracle13@ yahoo.comDate: 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Thank you so much for responding. When we went to Mt Sinai we didn't have a specific name, we were only told that, "The worst in Mt Sinai is better than the best in other places"We were assigned Dr Charissa Chang. We just don't get the feeling she has a great deal of experience with PSC. I had read about the Mayo clinic but I didn't know who to request so your input is a great help. Do you have a doctor in NY that you trust? We wish you and your family all the best. Theresa Subject: RE: Name of DoctorTo: @...Date: Monday, March 23, 2009, 11:45 PM Hi:I am in the same position as you since my spouse just got diagnosed. The names that seem to come up regularly as PS oriented specialists are Lindor at the Mayo Clinic Rochester and Marshall Kaplan in Boston. I joined the PSC partners for a cure and they highlight MDs who are doing research etc in this area. We are in NY. Who are you using in NYC? Best of luck. To: @ yahoogroups. comFrom: alexsmiracle13@ yahoo.comDate: 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Your experience sounds remarkably similar to ours. Our son has not complained of the itching but he is very disturbed by the "brain fog". Our understanding is that the pathologist reached the diagnosis of PSC based on the scarring in his bile ducts. Later the doctor specifically mentioned the small ducts as being the site of concern. She had told us the MRCP would confirm the PSC diagnosis but after the test we were also told the test was indeterminate. I am sure you can appreciate as a mom that "waiting to see how my child continues to debilitate" is NOT acceptable to me. If we find success with another doctor I will gladly post it for you and I ask if you would do the same. We wish you all the best. Theresa From: alexsmiracle13 <alexsmiracle13@ yahoo.com>Subject: Name of DoctorTo: @ yahoogroups. comDate: Monday, March 23, 2009, 4:57 PM 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...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Hi, all! For those of you looking for/asking about great doctors who are knowledgeable about PSC, I second the opinion that the Mayo Clinic is one of the best places you can head. I was a patient at the Mayo Clinic, ville for years and can't speak highly enough about Dr. Harnois there and her knowledge, compassion and ethics. My case turned out to be quite a complicated one (due to other auto-immune/GI diseases complicating the PSC) and Mayo ville has now referred me to Mayo Rochester. I've not personally met with Dr. Lindor or Dr. Gores yet, but they both have excellent reputations. I'm still making up my mind about my new hep here (he's actually getting better and better the sicker I get oddly enough) but the GI doc is fantastic and they are definitely using their all to find ways to help me. One of the reasons I'm so big on the Mayo docs, in case any of you were wondering, is I went to several other hospitals where they were supposedly " experts " or " experienced " with PSC. I ended up with a lot of unnecessary procedures, tests, medications, expenses, etc. and actually got worse instead of better up until the time I became a patient at the Mayo Clinic. Anyhow, I'm sure there are lots of great PSC docs out there, but if you can get into a Mayo Clinic, I'd encourage you to look into it! Okay..that's my two cents for what they're worth! I hope everyone is feeling ridiculously well today! Oh, and while I'm talking about encouraging people to go to the best places they can for their health, if you all can possibly make it to the upcoming PSC Partners conference in Chicago this May 1-3, I think you'll find it a life-changing experience. It can't even be put into words the feeling of being in a room with people who are not only experiencing the same things you are but also patients/caregivers/reserachers/doctors, etc. all dedicated to finding a cure for PSC and not giving up on the fight! If anyone does want/need any futher information on how to sign up for the conference or has any questions on it, just let me know or go to www.pscpartners.org for more information! Sandi in VA/Rochester 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...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Hi, all! For those of you looking for/asking about great doctors who are knowledgeable about PSC, I second the opinion that the Mayo Clinic is one of the best places you can head. I was a patient at the Mayo Clinic, ville for years and can't speak highly enough about Dr. Harnois there and her knowledge, compassion and ethics. My case turned out to be quite a complicated one (due to other auto-immune/GI diseases complicating the PSC) and Mayo ville has now referred me to Mayo Rochester. I've not personally met with Dr. Lindor or Dr. Gores yet, but they both have excellent reputations. I'm still making up my mind about my new hep here (he's actually getting better and better the sicker I get oddly enough) but the GI doc is fantastic and they are definitely using their all to find ways to help me. One of the reasons I'm so big on the Mayo docs, in case any of you were wondering, is I went to several other hospitals where they were supposedly " experts " or " experienced " with PSC. I ended up with a lot of unnecessary procedures, tests, medications, expenses, etc. and actually got worse instead of better up until the time I became a patient at the Mayo Clinic. Anyhow, I'm sure there are lots of great PSC docs out there, but if you can get into a Mayo Clinic, I'd encourage you to look into it! Okay..that's my two cents for what they're worth! I hope everyone is feeling ridiculously well today! Oh, and while I'm talking about encouraging people to go to the best places they can for their health, if you all can possibly make it to the upcoming PSC Partners conference in Chicago this May 1-3, I think you'll find it a life-changing experience. It can't even be put into words the feeling of being in a room with people who are not only experiencing the same things you are but also patients/caregivers/reserachers/doctors, etc. all dedicated to finding a cure for PSC and not giving up on the fight! If anyone does want/need any futher information on how to sign up for the conference or has any questions on it, just let me know or go to www.pscpartners.org for more information! Sandi in VA/Rochester 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...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Hi, all! For those of you looking for/asking about great doctors who are knowledgeable about PSC, I second the opinion that the Mayo Clinic is one of the best places you can head. I was a patient at the Mayo Clinic, ville for years and can't speak highly enough about Dr. Harnois there and her knowledge, compassion and ethics. My case turned out to be quite a complicated one (due to other auto-immune/GI diseases complicating the PSC) and Mayo ville has now referred me to Mayo Rochester. I've not personally met with Dr. Lindor or Dr. Gores yet, but they both have excellent reputations. I'm still making up my mind about my new hep here (he's actually getting better and better the sicker I get oddly enough) but the GI doc is fantastic and they are definitely using their all to find ways to help me. One of the reasons I'm so big on the Mayo docs, in case any of you were wondering, is I went to several other hospitals where they were supposedly " experts " or " experienced " with PSC. I ended up with a lot of unnecessary procedures, tests, medications, expenses, etc. and actually got worse instead of better up until the time I became a patient at the Mayo Clinic. Anyhow, I'm sure there are lots of great PSC docs out there, but if you can get into a Mayo Clinic, I'd encourage you to look into it! Okay..that's my two cents for what they're worth! I hope everyone is feeling ridiculously well today! Oh, and while I'm talking about encouraging people to go to the best places they can for their health, if you all can possibly make it to the upcoming PSC Partners conference in Chicago this May 1-3, I think you'll find it a life-changing experience. It can't even be put into words the feeling of being in a room with people who are not only experiencing the same things you are but also patients/caregivers/reserachers/doctors, etc. all dedicated to finding a cure for PSC and not giving up on the fight! If anyone does want/need any futher information on how to sign up for the conference or has any questions on it, just let me know or go to www.pscpartners.org for more information! Sandi in VA/Rochester 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...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 My understanding is that they can't see small bile duct scarring with an MRCP - although they certainly had everyone and his brother looking...it felt kind of like being an exotic animal in a zoo. She was left inside the MRI tube for a little over an hour - no panic button, no music, no breaks - they didn't even ask her if she was claustrophobic. (She handled it well, but since I had recently had one I know they missed out on doing some of their standard procedure in their excitement at having a new guinea pig. She complained more about how hard it was to get her earring back through the cartilege piercing she had done just before school started - which, of course had to come out for the MRCP.)Post-diagnosis reading indicates that only about 40% of the biopsies catch the onion skin lesions that are characteristic of PSC - I haven't read enough yet to know whether those lesions also show up in overlap diseases.Your comment about not "waiting to see how my child continues to debilitate" is pretty much what I told my daughter's doc was not going to happen. He wanted to watch and wait, and I explained in no uncertain terms that that proposal was not acceptable. He ran a test to humor me - and here we are a little over a month after I issued that edict.That brain fog thing bothers me - she told me off and on during her high school career that there were times she just couldn't think. I thought she was just procrastinating and avoiding - which she is occasionally good at. I feel guilty for not taking her more seriously, although I am not sure what good it would have done, since her complaints were so non-specific. I can imagine the laughter I would have heard if I took the straight A student to her primary doctor complaining that she was tired and couldn't think straight.Your experience sounds remarkably similar to ours. Our son has not complained of the itching but he is very disturbed by the "brain fog". Our understanding is that the pathologist reached the diagnosis of PSC based on the scarring in his bile ducts. Later the doctor specifically mentioned the small ducts as being the site of concern. She had told us the MRCP would confirm the PSC diagnosis but after the test we were also told the test was indeterminate. I am sure you can appreciate as a mom that "waiting to see how my child continues to debilitate" is NOT acceptable to me. If we find success with another doctor I will gladly post it for you and I ask if you would do the same. We wish you all the best. Theresa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 My husband is with Ira sen at Cornell Weill and he has been excellent in terms of aggressively diagnosing what is going on. We are just starting to deal with the treatment phase, so that is still an unknown, but I have to say my husband and I have alot of confidence in him. He is a bright guy and he has a good support team. We have to pay privately and then deal with our insurance, if that is an issue for you. However, we had a previous doctor who took our insurance and we got nowhere, so we are just so grateful to find a good doctor. I have read that you can go up to Mayo and get a full workup and then have the MD in NYC monitor. You might also see if you can request Dr. Friedman at Mt. Sinai who also seems to be mentioned on the PSC partners for a cure website. Stay in touch and let me know how you make up.To: From: alexsmiracle13@...Date: Tue, 24 Mar 2009 07:24:51 -0700Subject: RE: Name of Doctor Thank you so much for responding. When we went to Mt Sinai we didn't have a specific name, we were only told that, "The worst in Mt Sinai is better than the best in other places"We were assigned Dr Charissa Chang. We just don't get the feeling she has a great deal of experience with PSC. I had read about the Mayo clinic but I didn't know who to request so your input is a great help. Do you have a doctor in NY that you trust? We wish you and your family all the best. Theresa From: Janet W. <Janet10 (AT) msn (DOT) com>Subject: RE: Name of DoctorTo: (AT) yahoogroups (DOT) .comDate: Monday, March 23, 2009, 11:45 PM Hi:I am in the same position as you since my spouse just got diagnosed. The names that seem to come up regularly as PS oriented specialists are Lindor at the Mayo Clinic Rochester and Marshall Kaplan in Boston. I joined the PSC partners for a cure and they highlight MDs who are doing research etc in this area. We are in NY. Who are you using in NYC? Best of luck. To: @ yahoogroups. comFrom: alexsmiracle13@ yahoo.comDate: 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 My husband is with Ira sen at Cornell Weill and he has been excellent in terms of aggressively diagnosing what is going on. We are just starting to deal with the treatment phase, so that is still an unknown, but I have to say my husband and I have alot of confidence in him. He is a bright guy and he has a good support team. We have to pay privately and then deal with our insurance, if that is an issue for you. However, we had a previous doctor who took our insurance and we got nowhere, so we are just so grateful to find a good doctor. I have read that you can go up to Mayo and get a full workup and then have the MD in NYC monitor. You might also see if you can request Dr. Friedman at Mt. Sinai who also seems to be mentioned on the PSC partners for a cure website. Stay in touch and let me know how you make up.To: From: alexsmiracle13@...Date: Tue, 24 Mar 2009 07:24:51 -0700Subject: RE: Name of Doctor Thank you so much for responding. When we went to Mt Sinai we didn't have a specific name, we were only told that, "The worst in Mt Sinai is better than the best in other places"We were assigned Dr Charissa Chang. We just don't get the feeling she has a great deal of experience with PSC. I had read about the Mayo clinic but I didn't know who to request so your input is a great help. Do you have a doctor in NY that you trust? We wish you and your family all the best. Theresa From: Janet W. <Janet10 (AT) msn (DOT) com>Subject: RE: Name of DoctorTo: (AT) yahoogroups (DOT) .comDate: Monday, March 23, 2009, 11:45 PM Hi:I am in the same position as you since my spouse just got diagnosed. The names that seem to come up regularly as PS oriented specialists are Lindor at the Mayo Clinic Rochester and Marshall Kaplan in Boston. I joined the PSC partners for a cure and they highlight MDs who are doing research etc in this area. We are in NY. Who are you using in NYC? Best of luck. To: @ yahoogroups. comFrom: alexsmiracle13@ yahoo.comDate: 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 I see Dr. Bruce Bacon at St. Louis University Hospital, a very knowledgeable liver specialist. Eugene -- In , Sandi Pearlman wrote: > > > Hi, all! > > For those of you looking for/asking about great doctors who are knowledgeable about PSC, I second the opinion that the Mayo Clinic is one of the best places you can head. I was a patient at the Mayo Clinic, ville for years and can't speak highly enough about Dr. Harnois there and her knowledge, compassion and ethics. My case turned out to be quite a complicated one (due to other auto-immune/GI diseases complicating the PSC) and Mayo ville has now referred me to Mayo Rochester. I've not personally met with Dr. Lindor or Dr. Gores yet, but they both have excellent reputations. I'm still making up my mind about my new hep here (he's actually getting better and better the sicker I get oddly enough) but the GI doc is fantastic and they are definitely using their all to find ways to help me. > > One of the reasons I'm so big on the Mayo docs, in case any of you were wondering, is I went to several other hospitals where they were supposedly " experts " or " experienced " with PSC. I ended up with a lot of unnecessary procedures, tests, medications, expenses, etc. and actually got worse instead of better up until the time I became a patient at the Mayo Clinic. > > Anyhow, I'm sure there are lots of great PSC docs out there, but if you can get into a Mayo Clinic, I'd encourage you to look into it! Okay..that's my two cents for what they're worth! I hope everyone is feeling ridiculously well today! > > Oh, and while I'm talking about encouraging people to go to the best places they can for their health, if you all can possibly make it to the upcoming PSC Partners conference in Chicago this May 1-3, I think you'll find it a life-changing experience. It can't even be put into words the feeling of being in a room with people who are not only experiencing the same things you are but also patients/caregivers/reserachers/doctors, etc. all dedicated to finding a cure for PSC and not giving up on the fight! If anyone does want/need any futher information on how to sign up for the conference or has any questions on it, just let me know or go to www.pscpartners.org for more information! > > Sandi in VA/Rochester > > 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...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 I see Dr. Bruce Bacon at St. Louis University Hospital, a very knowledgeable liver specialist. Eugene -- In , Sandi Pearlman wrote: > > > Hi, all! > > For those of you looking for/asking about great doctors who are knowledgeable about PSC, I second the opinion that the Mayo Clinic is one of the best places you can head. I was a patient at the Mayo Clinic, ville for years and can't speak highly enough about Dr. Harnois there and her knowledge, compassion and ethics. My case turned out to be quite a complicated one (due to other auto-immune/GI diseases complicating the PSC) and Mayo ville has now referred me to Mayo Rochester. I've not personally met with Dr. Lindor or Dr. Gores yet, but they both have excellent reputations. I'm still making up my mind about my new hep here (he's actually getting better and better the sicker I get oddly enough) but the GI doc is fantastic and they are definitely using their all to find ways to help me. > > One of the reasons I'm so big on the Mayo docs, in case any of you were wondering, is I went to several other hospitals where they were supposedly " experts " or " experienced " with PSC. I ended up with a lot of unnecessary procedures, tests, medications, expenses, etc. and actually got worse instead of better up until the time I became a patient at the Mayo Clinic. > > Anyhow, I'm sure there are lots of great PSC docs out there, but if you can get into a Mayo Clinic, I'd encourage you to look into it! Okay..that's my two cents for what they're worth! I hope everyone is feeling ridiculously well today! > > Oh, and while I'm talking about encouraging people to go to the best places they can for their health, if you all can possibly make it to the upcoming PSC Partners conference in Chicago this May 1-3, I think you'll find it a life-changing experience. It can't even be put into words the feeling of being in a room with people who are not only experiencing the same things you are but also patients/caregivers/reserachers/doctors, etc. all dedicated to finding a cure for PSC and not giving up on the fight! If anyone does want/need any futher information on how to sign up for the conference or has any questions on it, just let me know or go to www.pscpartners.org for more information! > > Sandi in VA/Rochester > > 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...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Thanks Sandi, I appreciate your invitation to the conference in Chicago. We will be busy that weekend. Maybe we can catch the next one. Eugene U/C 1993 PSC 2000 > > > > > > Hi, all! > > > > For those of you looking for/asking about great doctors who are knowledgeable about PSC, I second the opinion that the Mayo Clinic is one of the best places you can head. I was a patient at the Mayo Clinic, ville for years and can't speak highly enough about Dr. Harnois there and her knowledge, compassion and ethics. My case turned out to be quite a complicated one (due to other auto-immune/GI diseases complicating the PSC) and Mayo ville has now referred me to Mayo Rochester. I've not personally met with Dr. Lindor or Dr. Gores yet, but they both have excellent reputations. I'm still making up my mind about my new hep here (he's actually getting better and better the sicker I get oddly enough) but the GI doc is fantastic and they are definitely using their all to find ways to help me. > > > > One of the reasons I'm so big on the Mayo docs, in case any of you were wondering, is I went to several other hospitals where they were supposedly " experts " or " experienced " with PSC. I ended up with a lot of unnecessary procedures, tests, medications, expenses, etc. and actually got worse instead of better up until the time I became a patient at the Mayo Clinic. > > > > Anyhow, I'm sure there are lots of great PSC docs out there, but if you can get into a Mayo Clinic, I'd encourage you to look into it! Okay..that's my two cents for what they're worth! I hope everyone is feeling ridiculously well today! > > > > Oh, and while I'm talking about encouraging people to go to the best places they can for their health, if you all can possibly make it to the upcoming PSC Partners conference in Chicago this May 1-3, I think you'll find it a life-changing experience. It can't even be put into words the feeling of being in a room with people who are not only experiencing the same things you are but also patients/caregivers/reserachers/doctors, etc. all dedicated to finding a cure for PSC and not giving up on the fight! If anyone does want/need any futher information on how to sign up for the conference or has any questions on it, just let me know or go to www.pscpartners.org for more information! > > > > Sandi in VA/Rochester > > > > 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...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Thanks Sandi, I appreciate your invitation to the conference in Chicago. We will be busy that weekend. Maybe we can catch the next one. Eugene U/C 1993 PSC 2000 > > > > > > Hi, all! > > > > For those of you looking for/asking about great doctors who are knowledgeable about PSC, I second the opinion that the Mayo Clinic is one of the best places you can head. I was a patient at the Mayo Clinic, ville for years and can't speak highly enough about Dr. Harnois there and her knowledge, compassion and ethics. My case turned out to be quite a complicated one (due to other auto-immune/GI diseases complicating the PSC) and Mayo ville has now referred me to Mayo Rochester. I've not personally met with Dr. Lindor or Dr. Gores yet, but they both have excellent reputations. I'm still making up my mind about my new hep here (he's actually getting better and better the sicker I get oddly enough) but the GI doc is fantastic and they are definitely using their all to find ways to help me. > > > > One of the reasons I'm so big on the Mayo docs, in case any of you were wondering, is I went to several other hospitals where they were supposedly " experts " or " experienced " with PSC. I ended up with a lot of unnecessary procedures, tests, medications, expenses, etc. and actually got worse instead of better up until the time I became a patient at the Mayo Clinic. > > > > Anyhow, I'm sure there are lots of great PSC docs out there, but if you can get into a Mayo Clinic, I'd encourage you to look into it! Okay..that's my two cents for what they're worth! I hope everyone is feeling ridiculously well today! > > > > Oh, and while I'm talking about encouraging people to go to the best places they can for their health, if you all can possibly make it to the upcoming PSC Partners conference in Chicago this May 1-3, I think you'll find it a life-changing experience. It can't even be put into words the feeling of being in a room with people who are not only experiencing the same things you are but also patients/caregivers/reserachers/doctors, etc. all dedicated to finding a cure for PSC and not giving up on the fight! If anyone does want/need any futher information on how to sign up for the conference or has any questions on it, just let me know or go to www.pscpartners.org for more information! > > > > Sandi in VA/Rochester > > > > 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...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Thanks Sandi, I appreciate your invitation to the conference in Chicago. We will be busy that weekend. Maybe we can catch the next one. Eugene U/C 1993 PSC 2000 > > > > > > Hi, all! > > > > For those of you looking for/asking about great doctors who are knowledgeable about PSC, I second the opinion that the Mayo Clinic is one of the best places you can head. I was a patient at the Mayo Clinic, ville for years and can't speak highly enough about Dr. Harnois there and her knowledge, compassion and ethics. My case turned out to be quite a complicated one (due to other auto-immune/GI diseases complicating the PSC) and Mayo ville has now referred me to Mayo Rochester. I've not personally met with Dr. Lindor or Dr. Gores yet, but they both have excellent reputations. I'm still making up my mind about my new hep here (he's actually getting better and better the sicker I get oddly enough) but the GI doc is fantastic and they are definitely using their all to find ways to help me. > > > > One of the reasons I'm so big on the Mayo docs, in case any of you were wondering, is I went to several other hospitals where they were supposedly " experts " or " experienced " with PSC. I ended up with a lot of unnecessary procedures, tests, medications, expenses, etc. and actually got worse instead of better up until the time I became a patient at the Mayo Clinic. > > > > Anyhow, I'm sure there are lots of great PSC docs out there, but if you can get into a Mayo Clinic, I'd encourage you to look into it! Okay..that's my two cents for what they're worth! I hope everyone is feeling ridiculously well today! > > > > Oh, and while I'm talking about encouraging people to go to the best places they can for their health, if you all can possibly make it to the upcoming PSC Partners conference in Chicago this May 1-3, I think you'll find it a life-changing experience. It can't even be put into words the feeling of being in a room with people who are not only experiencing the same things you are but also patients/caregivers/reserachers/doctors, etc. all dedicated to finding a cure for PSC and not giving up on the fight! If anyone does want/need any futher information on how to sign up for the conference or has any questions on it, just let me know or go to www.pscpartners.org for more information! > > > > Sandi in VA/Rochester > > > > 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...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 I can not say enough good things about the tx team at Lahey in Boston. They have great hepatologists that have extensive knowledge of PSC. Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 Sandi, Thank you so much. I will be checking here very often now that I found this forum. It is nice to know we are not alone. Eugene (in Ky) > > > From: Gene > > Subject: Re: Name of Doctor > > To: > > Date: Thursday, March 26, 2009, 1:13 AM > > > > Thanks Sandi, I appreciate your invitation > > to the conference in Chicago. We will be busy that weekend. > > Maybe we can catch the next one. Eugene U/C 1993 PSC > > 2000 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 Sandi, Thank you so much. I will be checking here very often now that I found this forum. It is nice to know we are not alone. Eugene (in Ky) > > > From: Gene > > Subject: Re: Name of Doctor > > To: > > Date: Thursday, March 26, 2009, 1:13 AM > > > > Thanks Sandi, I appreciate your invitation > > to the conference in Chicago. We will be busy that weekend. > > Maybe we can catch the next one. Eugene U/C 1993 PSC > > 2000 > > > Quote Link to comment Share on other sites More sharing options...
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