Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 The PSC-partners brochure has the best list, in my opinion (http://www.pscpartners.org/PSCBrochure.pdf) • Pruritus or intense itching: particularly on soles of hands or feet, though it can occur anywhere, including in eyes and mouth. • Fatigue: feeling run down, unable to get enough sleep, flu-like tiredness. • Pain: in right side or middle of abdomen towards rib cage. Pain may be of any intensity and may last for indefinite period. • Jaundice: yellowing of eyes and skin caused by excess bilirubin that liver cannot process. • Chills and fever: signs of bacterial infections in bile ducts requiring immediate medical attention. Additionally, signs that PSC has progressed to cirrhosis, and that liver transplantation may be indicated, include: • Ascites: buildup of fluids in abdomen. • Encephalopathy: personality changes, intellectual impairment, and sleep disturbances caused by buildup of neurotoxins, such as ammonia, in blood. • Varices: swollen veins in gastrointestinal tract prone to bleeding. When gastrointestinal bleeding occurs, medical attention should be sought immediately, since this condition can be life-threatening. • Splenomegaly: swollen spleen. • Reduction in ability of blood to form clots: increase of prothrombin time or International Normalized Ratio (INR). • Impaired kidney function: increased serum creatinine levels. These are consistent with information on credible web sites (Mayo, WrongDiagnosis, NIDDK, ALF, etc.). The problem is that many of the symptoms listed are accompanied by others (especially if you have Crohn’s or UC), making it difficult to tell what’s going on. Just as an example, let’s say I’m experiencing fatigue, stiffness/pain in my back and neck. It comes and goes, but seems to be getting worse. Did I just overdo some activity (like baling hay!), is it a PSC flare, or am I experiencing ankylosing spondylitis (one of the possible extraintestinal complications of ulcerative colitis). Or is it just age (please, no!)? Also, it’s not uncommon at all for PSCers to have multiple autoimmune diseases, further complicating things (e.g., I have UC, PSC, asthma, eczema, arthritis). I don’t have a solution to your problem, but I sure understand it! Your best bet is to ask what people have experienced. I’m afraid there are no hard and fast rules. Arne UC 1977, PSC 2000 Alive and well in Minnesota …I asked this question to try and help myself get a better understanding of what might really be related to PSC and what might not be. There just seems to be so many opinions and so few answers… Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 Thanks Arne, That's what I am trying to do, but I have found that the better informed I am the better I can argue with those who think they are informed in the medical community or those that think a study with 8 people is an accurate representation of people with PSC. > > The PSC-partners brochure has the best list, in my opinion > (http://www.pscpartners.org/PSCBrochure.pdf) > > > > . Pruritus or intense itching: particularly on soles of hands or feet, > though it can occur anywhere, including in eyes and mouth. > > . Fatigue: feeling run down, unable to get enough sleep, flu-like tiredness. > > . Pain: in right side or middle of abdomen towards rib cage. Pain may be of > any intensity and may last for indefinite period. > > . Jaundice: yellowing of eyes and skin caused by excess bilirubin that liver > cannot process. > > . Chills and fever: signs of bacterial infections in bile ducts requiring > immediate medical attention. > > Additionally, signs that PSC has progressed to cirrhosis, and that liver > transplantation may be indicated, include: > > . Ascites: buildup of fluids in abdomen. > > . Encephalopathy: personality changes, intellectual im-pairment, and sleep > disturbances caused by buildup of neurotoxins, such as ammonia, in blood. > > . Varices: swollen veins in gastrointestinal tract prone to bleeding. When > gastrointestinal bleeding occurs, medical attention should be sought > immediately, since this condi-tion can be life-threatening. > > . Splenomegaly: swollen spleen. > > . Reduction in ability of blood to form clots: increase of prothrombin time > or International Normalized Ratio (INR). > > . Impaired kidney function: increased serum creatinine levels. > > > > These are consistent with information on credible web sites (Mayo, > WrongDiagnosis, NIDDK, ALF, etc.). The problem is that many of the symptoms > listed are accompanied by others (especially if you have Crohn's or UC), > making it difficult to tell what's going on. Just as an example, let's say > I'm experiencing fatigue, stiffness/pain in my back and neck. It comes and > goes, but seems to be getting worse. Did I just overdo some activity (like > baling hay!), is it a PSC flare, or am I experiencing ankylosing spondylitis > (one of the possible extraintestinal complications of ulcerative colitis). > Or is it just age (please, no!)? > > > > Also, it's not uncommon at all for PSCers to have multiple autoimmune > diseases, further complicating things (e.g., I have UC, PSC, asthma, eczema, > arthritis). > > > > I don't have a solution to your problem, but I sure understand it! Your > best bet is to ask what people have experienced. I'm afraid there are no > hard and fast rules. > > > > > > Arne > > UC 1977, PSC 2000 > > Alive and well in Minnesota > > > > > > .I asked this question to try and help myself get a better understanding of > what might really be related to PSC and what might not be. There just seems > to be so many opinions and so few answers. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 Thanks Arne, That's what I am trying to do, but I have found that the better informed I am the better I can argue with those who think they are informed in the medical community or those that think a study with 8 people is an accurate representation of people with PSC. > > The PSC-partners brochure has the best list, in my opinion > (http://www.pscpartners.org/PSCBrochure.pdf) > > > > . Pruritus or intense itching: particularly on soles of hands or feet, > though it can occur anywhere, including in eyes and mouth. > > . Fatigue: feeling run down, unable to get enough sleep, flu-like tiredness. > > . Pain: in right side or middle of abdomen towards rib cage. Pain may be of > any intensity and may last for indefinite period. > > . Jaundice: yellowing of eyes and skin caused by excess bilirubin that liver > cannot process. > > . Chills and fever: signs of bacterial infections in bile ducts requiring > immediate medical attention. > > Additionally, signs that PSC has progressed to cirrhosis, and that liver > transplantation may be indicated, include: > > . Ascites: buildup of fluids in abdomen. > > . Encephalopathy: personality changes, intellectual im-pairment, and sleep > disturbances caused by buildup of neurotoxins, such as ammonia, in blood. > > . Varices: swollen veins in gastrointestinal tract prone to bleeding. When > gastrointestinal bleeding occurs, medical attention should be sought > immediately, since this condi-tion can be life-threatening. > > . Splenomegaly: swollen spleen. > > . Reduction in ability of blood to form clots: increase of prothrombin time > or International Normalized Ratio (INR). > > . Impaired kidney function: increased serum creatinine levels. > > > > These are consistent with information on credible web sites (Mayo, > WrongDiagnosis, NIDDK, ALF, etc.). The problem is that many of the symptoms > listed are accompanied by others (especially if you have Crohn's or UC), > making it difficult to tell what's going on. Just as an example, let's say > I'm experiencing fatigue, stiffness/pain in my back and neck. It comes and > goes, but seems to be getting worse. Did I just overdo some activity (like > baling hay!), is it a PSC flare, or am I experiencing ankylosing spondylitis > (one of the possible extraintestinal complications of ulcerative colitis). > Or is it just age (please, no!)? > > > > Also, it's not uncommon at all for PSCers to have multiple autoimmune > diseases, further complicating things (e.g., I have UC, PSC, asthma, eczema, > arthritis). > > > > I don't have a solution to your problem, but I sure understand it! Your > best bet is to ask what people have experienced. I'm afraid there are no > hard and fast rules. > > > > > > Arne > > UC 1977, PSC 2000 > > Alive and well in Minnesota > > > > > > .I asked this question to try and help myself get a better understanding of > what might really be related to PSC and what might not be. There just seems > to be so many opinions and so few answers. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 Thanks arne!Sent via BlackBerry by AT&TFrom: "A&J M" Date: Thu, 1 Jan 2009 10:01:37 -0600To: < >Subject: Polls/PSC symptoms The PSC-partners brochure has the best list, in my opinion (http://www.pscpartners.org/PSCBrochure.pdf) • Pruritus or intense itching: particularly on soles of hands or feet, though it can occur anywhere, including in eyes and mouth. • Fatigue: feeling run down, unable to get enough sleep, flu-like tiredness. • Pain: in right side or middle of abdomen towards rib cage. Pain may be of any intensity and may last for indefinite period. • Jaundice: yellowing of eyes and skin caused by excess bilirubin that liver cannot process. • Chills and fever: signs of bacterial infections in bile ducts requiring immediate medical attention. Additionally, signs that PSC has progressed to cirrhosis, and that liver transplantation may be indicated, include: • Ascites: buildup of fluids in abdomen. • Encephalopathy: personality changes, intellectual impairment, and sleep disturbances caused by buildup of neurotoxins, such as ammonia, in blood. • Varices: swollen veins in gastrointestinal tract prone to bleeding. When gastrointestinal bleeding occurs, medical attention should be sought immediately, since this condition can be life-threatening. • Splenomegaly: swollen spleen. • Reduction in ability of blood to form clots: increase of prothrombin time or International Normalized Ratio (INR). • Impaired kidney function: increased serum creatinine levels. These are consistent with information on credible web sites (Mayo, WrongDiagnosis, NIDDK, ALF, etc.). The problem is that many of the symptoms listed are accompanied by others (especially if you have Crohn’s or UC), making it difficult to tell what’s going on. Just as an example, let’s say I’m experiencing fatigue, stiffness/pain in my back and neck. It comes and goes, but seems to be getting worse. Did I just overdo some activity (like baling hay!), is it a PSC flare, or am I experiencing ankylosing spondylitis (one of the possible extraintestinal complications of ulcerative colitis). Or is it just age (please, no!)? Also, it’s not uncommon at all for PSCers to have multiple autoimmune diseases, further complicating things (e.g., I have UC, PSC, asthma, eczema, arthritis). I don’t have a solution to your problem, but I sure understand it! Your best bet is to ask what people have experienced. I’m afraid there are no hard and fast rules. Arne UC 1977, PSC 2000 Alive and well in Minnesota …I asked this question to try and help myself get a better understanding of what might really be related to PSC and what might not be. There just seems to be so many opinions and so few answers… Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 Thanks arne!Sent via BlackBerry by AT&TFrom: "A&J M" Date: Thu, 1 Jan 2009 10:01:37 -0600To: < >Subject: Polls/PSC symptoms The PSC-partners brochure has the best list, in my opinion (http://www.pscpartners.org/PSCBrochure.pdf) • Pruritus or intense itching: particularly on soles of hands or feet, though it can occur anywhere, including in eyes and mouth. • Fatigue: feeling run down, unable to get enough sleep, flu-like tiredness. • Pain: in right side or middle of abdomen towards rib cage. Pain may be of any intensity and may last for indefinite period. • Jaundice: yellowing of eyes and skin caused by excess bilirubin that liver cannot process. • Chills and fever: signs of bacterial infections in bile ducts requiring immediate medical attention. Additionally, signs that PSC has progressed to cirrhosis, and that liver transplantation may be indicated, include: • Ascites: buildup of fluids in abdomen. • Encephalopathy: personality changes, intellectual impairment, and sleep disturbances caused by buildup of neurotoxins, such as ammonia, in blood. • Varices: swollen veins in gastrointestinal tract prone to bleeding. When gastrointestinal bleeding occurs, medical attention should be sought immediately, since this condition can be life-threatening. • Splenomegaly: swollen spleen. • Reduction in ability of blood to form clots: increase of prothrombin time or International Normalized Ratio (INR). • Impaired kidney function: increased serum creatinine levels. These are consistent with information on credible web sites (Mayo, WrongDiagnosis, NIDDK, ALF, etc.). The problem is that many of the symptoms listed are accompanied by others (especially if you have Crohn’s or UC), making it difficult to tell what’s going on. Just as an example, let’s say I’m experiencing fatigue, stiffness/pain in my back and neck. It comes and goes, but seems to be getting worse. Did I just overdo some activity (like baling hay!), is it a PSC flare, or am I experiencing ankylosing spondylitis (one of the possible extraintestinal complications of ulcerative colitis). Or is it just age (please, no!)? Also, it’s not uncommon at all for PSCers to have multiple autoimmune diseases, further complicating things (e.g., I have UC, PSC, asthma, eczema, arthritis). I don’t have a solution to your problem, but I sure understand it! Your best bet is to ask what people have experienced. I’m afraid there are no hard and fast rules. Arne UC 1977, PSC 2000 Alive and well in Minnesota …I asked this question to try and help myself get a better understanding of what might really be related to PSC and what might not be. There just seems to be so many opinions and so few answers… Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 I put NONE, though I am rethinking it may be other. I do not have PAIN in the RUQ, but I do often feel something there, more like a small rock or brick sitting there. Not painful though. ee > > Thanks Arne, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 I put NONE, though I am rethinking it may be other. I do not have PAIN in the RUQ, but I do often feel something there, more like a small rock or brick sitting there. Not painful though. ee > > Thanks Arne, > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.