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 24, 2009 Report Share Posted March 24, 2009 I have seen Dr. Lindor, as I live in Minnesota. he IS good, but make sure that your insurance covers it as it is VERY expensive to go there. I was denied due to the fact that Medica sees PSC as "ongoing problems due to Cholangitis". That was $8000.00 out of my pocket.So just be sure that insurace covers it. annie Subject: Re: Name of DoctorTo: Date: Tuesday, March 24, 2009, 10:12 AM 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/RochesterSo 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 have seen Dr. Lindor, as I live in Minnesota. he IS good, but make sure that your insurance covers it as it is VERY expensive to go there. I was denied due to the fact that Medica sees PSC as "ongoing problems due to Cholangitis". That was $8000.00 out of my pocket.So just be sure that insurace covers it. annie Subject: Re: Name of DoctorTo: Date: Tuesday, March 24, 2009, 10:12 AM 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/RochesterSo 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 have seen Dr. Lindor, as I live in Minnesota. he IS good, but make sure that your insurance covers it as it is VERY expensive to go there. I was denied due to the fact that Medica sees PSC as "ongoing problems due to Cholangitis". That was $8000.00 out of my pocket.So just be sure that insurace covers it. annie Subject: Re: Name of DoctorTo: Date: Tuesday, March 24, 2009, 10:12 AM 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/RochesterSo 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 Would, "Duh?" be an appropriate response?The logic of that escapes me. Of course it is an ongoing problem, a complex one that no one has really figured out how to treat - and there aren't that many docs with experience even trying to treat it. A company really committed to the health of its insured clients ought to want to make sure they have physicians with the most experience treating them...Oh wait, I temporarily forgot I was talking about insurance companies.(You'll have to forgive me - I'm a bit cynical and impatient with insurance companies after all the hoops we had to jump through during diagnosis - and the additional hoops I expect to have to jump through to wring the super secret password to the Cleveland Clinic out of them. The Clinic is covered by my health care plan - but their response when we asked them about it in connection with another family illness was, "Usually we can cover medical care without sending you to the Clinic." A year later,spent repeating multiple non-surgical options that had already been tried, we ended up at the Clinic for surgery anyway....stepping down off my soapbox, now.)Sorry you got dinged for that cost.Subject: Re: Name of DoctorTo: Date: Tuesday, March 24, 2009, 9:50 PM I have seen Dr. Lindor, as I live in Minnesota. he IS good, but make sure that your insurance covers it as it is VERY expensive to go there. I was denied due to the fact that Medica sees PSC as "ongoing problems due to Cholangitis" . That was $8000.00 out of my pocket.So just be sure that insurace covers it. annie- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Would, "Duh?" be an appropriate response?The logic of that escapes me. Of course it is an ongoing problem, a complex one that no one has really figured out how to treat - and there aren't that many docs with experience even trying to treat it. A company really committed to the health of its insured clients ought to want to make sure they have physicians with the most experience treating them...Oh wait, I temporarily forgot I was talking about insurance companies.(You'll have to forgive me - I'm a bit cynical and impatient with insurance companies after all the hoops we had to jump through during diagnosis - and the additional hoops I expect to have to jump through to wring the super secret password to the Cleveland Clinic out of them. The Clinic is covered by my health care plan - but their response when we asked them about it in connection with another family illness was, "Usually we can cover medical care without sending you to the Clinic." A year later,spent repeating multiple non-surgical options that had already been tried, we ended up at the Clinic for surgery anyway....stepping down off my soapbox, now.)Sorry you got dinged for that cost.Subject: Re: Name of DoctorTo: Date: Tuesday, March 24, 2009, 9:50 PM I have seen Dr. Lindor, as I live in Minnesota. he IS good, but make sure that your insurance covers it as it is VERY expensive to go there. I was denied due to the fact that Medica sees PSC as "ongoing problems due to Cholangitis" . That was $8000.00 out of my pocket.So just be sure that insurace covers it. annie- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Would, "Duh?" be an appropriate response?The logic of that escapes me. Of course it is an ongoing problem, a complex one that no one has really figured out how to treat - and there aren't that many docs with experience even trying to treat it. A company really committed to the health of its insured clients ought to want to make sure they have physicians with the most experience treating them...Oh wait, I temporarily forgot I was talking about insurance companies.(You'll have to forgive me - I'm a bit cynical and impatient with insurance companies after all the hoops we had to jump through during diagnosis - and the additional hoops I expect to have to jump through to wring the super secret password to the Cleveland Clinic out of them. The Clinic is covered by my health care plan - but their response when we asked them about it in connection with another family illness was, "Usually we can cover medical care without sending you to the Clinic." A year later,spent repeating multiple non-surgical options that had already been tried, we ended up at the Clinic for surgery anyway....stepping down off my soapbox, now.)Sorry you got dinged for that cost.Subject: Re: Name of DoctorTo: Date: Tuesday, March 24, 2009, 9:50 PM I have seen Dr. Lindor, as I live in Minnesota. he IS good, but make sure that your insurance covers it as it is VERY expensive to go there. I was denied due to the fact that Medica sees PSC as "ongoing problems due to Cholangitis" . That was $8000.00 out of my pocket.So just be sure that insurace covers it. annie- 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 Eugene, Hi! Sorry you won't be able to make it to this year's conference. We'll just have to look forward to meeting you at the 2010 one! Sandi in VA/Rochester > > 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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