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New to PSC am I an odd ball

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I don't have but a few minutes, I apologize, so I can't get into too much. However, I will tell you...you are not an oddball! Not at all! Everything you described fits the bill for PSC. Granted, some people have it for awhile and never know it because they don't have symptoms, but at disease progresses these things (more often than not) occur.

Hopefully, others will respond to this too, and you can get a clearer picture as to why these things happen.

Good luck and welcome to the group.

(MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejsAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

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I am new to all this and am wondering if my story is typical of people

with PSC. I became ill 18 months ago with URQ pain, fatigue, chills

and repeated infections. First they said it was my gall bladder and

took that out, then I had Sphyincter of Oddi Dysfunction. Now three

consultants and 18 months later I have PSC. I am generally ok as long

as I am careful but when ever I have any drugs such as sedatives,

local anaesthetics,pain killers,or drink alcohol or eat dairy and meat

products I am much worse very ill go yellow, icthy all over, very

tired, feel sick and severe pain, if I have been to the dentist I get

bleeding teeth and it takes weeks to get over these events. My doctors

he has never heard of this and is puzzled. I was wondering if this is

normal or am I just an odd ball.

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What you are feeling and going through is normal to us. Are you getting any meds? I think you should talk to your dr. about getting on ursodial, it helps the bile move through the ducts rather then backing up into the liver. You might also need to get hooked up with the team in a transplant center. The sooner the better, that way they can monitor you so you will know what is going on, and they will know that you need to be listed for transplant. It is much better to have all the tests done before your liver really fails, and for them to know your history before you are desperate for a tx. The itching can be treated with meds or light treatments, the URQ pain backs off for some people after having stents put in the biliary ducts and the people on the transplant team can answer the questions you must have about insurance, post tx care, how to prepare your family and friends, and even hook you up with another PSC patient for support.

It sounds like you have already been through the surgery process and have connections in the medical field, but make sure you are talking to a gastroenterologist who has experience with PSC and liver transplants. Not all of them do. The help is available here and from the transplant team. Just ask.

Take Care

MizKitAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

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" siobhan4073 " ,

Your sensitivity to drugs and food may be an indication that your

liver is very marginal in its capacity to metabolize any additional

load. The severe bleeding may also be due to poor liver synthesis of

clotting factors or inadequate absorption of vitamin K (one of the

fat soluble vitamins, A, D, E and K, which can be deficient in PSC).

The jaundice (yellow), itching, fatigue are all general symptoms of

liver disease and occur with PSC. Severe pain and feeling sick with

chills and fever often occur with PSC when bile ducts become blocked

and infected. If you are having fevers that is an indication of

infection and immediate medical treatment should be sought. Pain

alone may be caused by a blocked bile duct, which may pass with no

intervention. What you do will depend on how severe the pain is.

Over all I would say your symptoms are typical of a fairly advanced

case of PSC, and at any hospital where there is a liver transplant

program there would be doctors who would immediately recognize your

symptoms. You might consider getting a reference to such a place.

Tim R, ltx 1998, recurrent PSC 2002

>

> I am new to all this and am wondering if my story is typical of

people

> with PSC. ... I am generally ok as long

> as I am careful but when ever I have any drugs such as sedatives,

> local anaesthetics,pain killers,or drink alcohol or eat dairy and

meat

> products I am much worse very ill go yellow, icthy all over, very

> tired, feel sick and severe pain, if I have been to the dentist I

get

> bleeding teeth and it takes weeks to get over these events. My

doctors

> he has never heard of this and is puzzled. I was wondering if this

is

> normal or am I just an odd ball.

>

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