Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Hi Everybody: I had e-mailed recently and said that my new doc had questioned me having PSC because my blood work had come back normal. Lots of you with PSC have had normal blood work after medication, stents, etc, so I didn't really think too much about it but now I have had an ultrasound done and the tech said that she saw nothing to indicate anything wrong. I have only had one ultrasound done before and that was over 6 years ago. I have had MRI's, CT's and ERCP's done that all showed PSC. I would be thrilled if this were gone or if they discovered that it had never really been there to begin with but I have been told by 2 other doctors that this was PSC. I am beyond knowing what to think. For six years I have lived with this disease and now it may not be there. Have any of you gone through anything similar? PSC '01 Crohn's =========================================================== 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 January 18, 2008 Report Share Posted January 18, 2008 > I have had an ultrasound done and the tech said that she saw nothing to indicate anything wrong. Hi On my road to getting diagnosed with PSC, it was originally thought I had gallstones. I had a an ultrasound to check this, gallstones were found in my gallbladder, but none in my bile ducts. The technician commented in passing, 'You have such a healthy liver, it looks great'. HUH about 3 months later I had an ERCP which showed up 'findings entirely consistent of PSC'. I am sure there have been previous postings that say that ultrasounds do not give a good indication of PSC. I do hope that things will be resolved for you. Best wishes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 I have to see the gastro on Wednesday and for the first time I am going to actually ask for a CT. If it shows clear then I will celebrate the miracle. >>> " J " 1/18/2008 2:22 PM >>> > I have had an ultrasound done and the tech said that she saw nothing to indicate anything wrong. Hi On my road to getting diagnosed with PSC, it was originally thought I had gallstones. I had a an ultrasound to check this, gallstones were found in my gallbladder, but none in my bile ducts. The technician commented in passing, 'You have such a healthy liver, it looks great'. HUH about 3 months later I had an ERCP which showed up 'findings entirely consistent of PSC'. I am sure there have been previous postings that say that ultrasounds do not give a good indication of PSC. I do hope that things will be resolved for you. Best wishes =========================================================== 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 January 18, 2008 Report Share Posted January 18, 2008 Sorry to say this , but I had a 'completely normal' liver ultrasound at the end of November. A follow-up MRCP showed the classic beaded ducts of PSC, which were bad enough in one area to warrant (along with my symptoms) an ERCP with balloon dilation and stent insertion. I have now leared that I, personally, don't particularly trust the results of a liver ultround--we thought the clear US was a very GOOD thing only to be subsequently let down with the PSC dx. Genevieve UC 1983, J-pouch 1999, PSC 12/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Do any of you ever just want to stop doing the medication and doctor thing?? It is very difficult for me to be told that blood work is find, ultrasound is fine but I know that I was really hurting yesterday. It makes me feel as if it is all in my head and I know that it wasn't. For the first time yesterday, I experienced that nasty RUQ pain that I have heard some of you talk about in the past. It was really bad and the nausea that went along with it was not a lot of fun either. It is just all very frustrating at times, as I'm sure you all know. Thanks for letting me vent. >>> Genevieve 1/18/2008 2:35 PM >>> Sorry to say this , but I had a 'completely normal' liver ultrasound at the end of November. A follow-up MRCP showed the classic beaded ducts of PSC, which were bad enough in one area to warrant (along with my symptoms) an ERCP with balloon dilation and stent insertion. I have now leared that I, personally, don't particularly trust the results of a liver ultround--we thought the clear US was a very GOOD thing only to be subsequently let down with the PSC dx. Genevieve UC 1983, J-pouch 1999, PSC 12/07 =========================================================== 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 January 18, 2008 Report Share Posted January 18, 2008 Sure (I'd like to stop), but I can't figure out how it might help. :-) It IS frustrating, and no one seems to react the same way. I pretty sure it's frustrating to the doctors also. I know it was for my father. Hang in there, it's NOT in your head. Arne 56 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Wilkinson Do any of you ever just want to stop doing the medication and doctor thing?? It is very difficult for me to be told that blood work is find, ultrasound is fine but I know that I was really hurting yesterday. It makes me feel as if it is all in my head and I know that it wasn't... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 > > Do any of you ever just want to stop doing the medication and doctor thing?? You bet! After years and years of it, it gets tiresome. I even tried stopping my asacol for UC once. Big mistake! I had a major flare-up within a week and had to go on prednisone. I've had several ERCPs done which showed my bile ducts to be in good shape, but lab reports and two liver biopsies show PSC. PSC has been a slow progression for me (thank goodness) but you just have to keep up the medication and doctor routine so that progression can be monitored. UC 1991, PSC 2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Don't worry, I think that most of us PSC'er have had or are having all the same things happen. I know I had a bid flair up the day after Christmas. Just ruin New Years eve. Could not stay awake long enough. Good luck to you. LEE G > > Sure (I'd like to stop), but I can't figure out how it might help. :-) > > It IS frustrating, and no one seems to react the same way. I pretty sure > it's frustrating to the doctors also. I know it was for my father. > > Hang in there, it's NOT in your head. > > > Arne > 56 - UC 1977, PSC 2000 > Alive and (mostly) well in Minnesota > > > ________________________________ > > From: [mailto:psc- support ] On > Behalf Of Wilkinson > > > Do any of you ever just want to stop doing the medication and doctor thing?? > It is very difficult for me to be told that blood work is find, ultrasound > is fine but I know that I was really hurting yesterday. It makes me feel as > if it is all in my head and I know that it wasn't... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 HI , I'd love to celebrate a miracle with you! However, I hate to be the bearer of cold water, but my liver looks fine by ultrasound, even though CT and MRCP show the left lobe is atrophied, and MRCP shows beaded ducts and strictures. The docs seem to use MRCP to look at progression and strictures (and possibly for cholangiocarcinoma, but the radiologist needs to know what he/she should look for!). They use CT if they want to know if I'm bleeding in the liver, like after a liver biopsy. So MRCP might be a rational choice, but US doesn't show some important changes. Best of luck, Martha (MA) UC 1979, PSC 1992 > > I have to see the gastro on Wednesday and for the first time I am going to actually ask for a CT. If it shows clear then I will celebrate the miracle. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 In May my ultrasound was " normal " but my ERCP and Liver biopsy done a week later was not and I had/have cirrhosis and that is when I was diagnosed with PSC. My ultrasound in Aug. done at a different facility was not normal. I think I would ask for a MRCP. I did not have a CT until after a MRI had an area that they need a more discriptive picture of because they thought I had a tumor, it ended up being fluid in the liver. I think we all get frustrated and so do the docs especially since everone seems to present and progress differently. One day at a time, PSC 5/2007 Listed > > Hi Everybody: > I had e-mailed recently and said that my new doc had questioned me having PSC because my blood work had come back normal. Lots of you with PSC have had normal blood work after medication, stents, etc, so I didn't really think too much about it but now I have had an ultrasound done and the tech said that she saw nothing to indicate anything wrong. I have only had one ultrasound done before and that was over 6 years ago. I have had MRI's, CT's and ERCP's done that all showed PSC. > I would be thrilled if this were gone or if they discovered that it had never really been there to begin with but I have been told by 2 other doctors that this was PSC. I am beyond knowing what to think. For six years I have lived with this disease and now it may not be there. Have any of you gone through anything similar? > > PSC '01 > Crohn's > > > =========================================================== > 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 January 19, 2008 Report Share Posted January 19, 2008 , Our 15 year old son has PSC. He was diagnosed by liver biopsy in Oct. 2006. ERCP at the time was still normal. Liver untrasound showed nothing....because he didn't have stones in it or in the gallbladder. Our experience has been that PSC doesn't show on the ultrasound other than the size of the liver on the outside. The blood work does return to normal on medication(High dose Urso and also Rifampin) unless there is a flare up that requires antibiotics. The results of the PSC on the ducts and inside of the liver are able to be seen on the MRI/MRV with contrast, and in Tyler's Liver Biopsy. If your doctor is new to PSC then he probably doesn't understand the fact of the return to normal blood values as a result of medication being normal stable for PSC patient, and also the fact that ultrasound isn't the best view of a PSC patients condition inside the liver! Just my thoughts. Cindy, Mom to 15 year old with PSC, 2006 Hi Everybody:I had e-mailed recently and said that my new doc had questioned me having PSC because my blood work had come back normal. Lots of you with PSC have had normal blood work after medication, stents, etc, so I didn't really think too much about it but now I have had an ultrasound done and the tech said that she saw nothing to indicate anything wrong. I have only had one ultrasound done before and that was over 6 years ago. I have had MRI's, CT's and ERCP's done that all showed PSC. I would be thrilled if this were gone or if they discovered that it had never really been there to begin with but I have been told by 2 other doctors that this was PSC. I am beyond knowing what to think. For six years I have lived with this disease and now it may not be there. Have any of you gone through anything similar?PSC '01Start the year off right. Easy ways to stay in shape in the new year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 I am anxious to hear what this new doctor says on Wednesday. I'm certain that my medical records made for interesting reading. All of these things that you want to keep private are all out there for the reading. At the time that I found out about the PSC six years ago, I was newly into treatment for anorexia. I had battled with it for many years but had only sought treatment a short time before the diagnosis. I am such a private person when it comes to my past that I couldn't even discuss it with the doctor. I had to have my therapist call and discuss with him why I was battling with it. Just the fact that this issue is there, makes it more difficult when the lab work doesn't match up with the symptoms. I have not discussed this issue with this new doctor but I know it is in the records. I figure when he reads it that he will just automatically think I'm nuts. Now, as an after effect of this medical situation and the grief of a new divorce from a man that I adored, I find myself back in the middle of grips of anorexia again. I am fine as long as life is running smoothly but when things start spinning out of my control, I fall back into this trap. While I didn't realize it at the time, I guess that could, in fact, be the reason I was having problems last week. It didn't really become clear to me until this weekend that the problem was back and had been back for a couple of weeks. When I can't control anything else, I control food intake which as stupid as I know it is - it makes me feel stronger. It also doesn't help that a friend of mine returned to town yesterday, after being gone a month and just could not say enough about how great I look. It is hard to stop anorexia when you are being told you look so great! I don't normally go into all of this but I know that at the moment, I'm struggling. I'm ready for all of this to go away. Don't judge too harshly, I am an incredibly responsible person in every other part of my life. Thanks. PSC '01 >>> " A & J M " 1/18/2008 4:50 PM >>> Sure (I'd like to stop), but I can't figure out how it might help. :-) It IS frustrating, and no one seems to react the same way. I pretty sure it's frustrating to the doctors also. I know it was for my father. Hang in there, it's NOT in your head. Arne 56 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Wilkinson Do any of you ever just want to stop doing the medication and doctor thing?? It is very difficult for me to be told that blood work is find, ultrasound is fine but I know that I was really hurting yesterday. It makes me feel as if it is all in my head and I know that it wasn't... =========================================================== 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 January 21, 2008 Report Share Posted January 21, 2008 Hi ,I had a hard time deciding whether or not to write back to you via the PSC support group or just write to you privately. I've had to reveal a lot about my past because of this disease. I am an incest survivor (though that does not define me) and have PTSD. So going through all the medical and hospital routines, the probing, questioning, poking, pain, helplessness, has triggered me many times. I was probably borderline anorexic (though never diagnosed) for many years and yes, got a lot of positive feedback for how skinny and good I looked. I congratulate you for your courage in going public online. It's a safe place to do it. There is a lot to handle in dealing with PSC. You mention grief over a new divorce and you also mention a need for control that you satisfy by controlling food intake. Grief and lack of control are hallmarks of PSC, I believe. Those are the big stumbling blocks emotionally. I have taken (and still take) 2 different antidepressants but have gotten the most help from going to a therapist. I get zapped by depression easily and I do everything I can do to fight my way out of that wet paper bag. I also recently counted myself as 3 months hospital-free. Except for a routine CT scan and a new doctor visit, I haven't been admitted as a patient for 3 months. That's how I'm gaining control. Yet I also know it's ephemeral and I could get a flare-up with cholangitis at any time. When I'm in the midst of some kind of treatment, though, I'm a mess -- and I depend on my caregivers (the nurses are great) and friends and family a lot at those times. When I went for my CT scan, the nurse had to stick me 6 times to get an IV line for the contrast dye. I just zone out into la-la-land and try to stay calm. It hurts, it's invasive, and I get triggered. But I knew I could leave that day. You're on the right track to get therapy and treatment for the anorexia. Remember, that's not WHO or WHAT you are. Neither is the PSC. You are more than your story. You are a soul with heart and compassion for others. I don't think anyone on this list will judge you for simply being human. If anything, you will find a lot of compassion and understanding here. I am sending you my support and welcome your response either privately or on the list. DanaPSC 2-1-06Posted by: " Wilkinson " lindawilkinson@... peaches16008 Date: Mon Jan 21, 2008 4:44 am ((PST)) I am anxious to hear what this new doctor says on Wednesday. I'm certain that my medical records made for interesting reading. All of these things that you want to keep private are all out there for the reading. At the time that I found out about the PSC six years ago, I was newly into treatment for anorexia. I had battled with it for many years but had only sought treatment a short time before the diagnosis. I am such a private person when it comes to my past that I couldn't even discuss it with the doctor. I had to have my therapist call and discuss with him why I was battling with it. Just the fact that this issue is there, makes it more difficult when the lab work doesn't match up with the symptoms. I have not discussed this issue with this new doctor but I know it is in the records. I figure when he reads it that he will just automatically think I'm nuts. Now, as an after effect of this medical situation and the grief of a new divorce from a man that I adored, I find myself back in the middle of grips of anorexia again. I am fine as long as life is running smoothly but when things start spinning out of my control, I fall back into this trap. While I didn't realize it at the time, I guess that could, in fact, be the reason I was having problems last week. It didn't really become clear to me until this weekend that the problem was back and had been back for a couple of weeks. When I can't control anything else, I control food intake which as stupid as I know it is - it makes me feel stronger. It also doesn't help that a friend of mine returned to town yesterday, after being gone a month and just could not say enough about how great I look. It is hard to stop anorexia when you are being told you look so great! I don't normally go into all of this but I know that at the moment, I'm struggling. I'm ready for all of this to go away. Don't judge too harshly, I am an incredibly responsible person in every other part of my life. Thanks. PSC '01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 -----Original Message----- Grief and lack of control are hallmarks of PSC, I believe. When I went for my CT scan, the nurse had to stick me 6 times to get an IV line for the contrast dye. I’d like to make 2 quick comments please. I think grief & lack of control are hallmarks of any disease (not just PSC.) The next time someone has a problem getting an IV line put in or drawing blood, please, please, try a double tourniquet. The nurse puts the first tourniquet in the usual spot on your upper arm muscle, the second tourniquet goes right below the elbow. If you wait about 4-5 seconds the veins on your hand, in or around your wrist area, will pop right up – works every time it’s tried. (At least for Ken.) HTH Barb in Texas - Together in the Fight, Whatever it Takes! Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 , First, I don't think you'll find a judgemental soul anywhere near this group. We all know intimately the stresses of chronic illness in general and PSC specifically and I'd venture to say that they have made very basic and fundamental changes in many of us... myself included. Second, as many have already said, I wouldn't place too much stock in a " normal " ultrasound. My liver looks great from the outside. Unfortunately, from the inside... not so much. ERCP or at least MRCP should be the desired tests for diagnosis and monitoring of the PSC. Sorry to rain on your parade. Finally, best wishes, good vibes, and many prayers go out to you for support in dealing with your other personal difficulties. While PSC can seem to dominate our lives much of the time, we need to remember that our real lives go on. As my GP reminded me a few weeks ago, just because your liver is well taken care of and watched after doesn't mean other things can't go wrong. We'll be around for support with more than just the PSC if you need us. Peace, Bill Wise PSC '00, Listed Tx '04 Quote Link to comment Share on other sites More sharing options...
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