Polls/PSC symptoms

[Guest guest]

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…

[Guest guest]

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.

>

[Guest guest]

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.

>

[Guest guest]

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…

[Guest guest]

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…

[Guest guest]

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,

>

[Guest guest]

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,

>