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Re: GI Doctor in Denial

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I have had my local doc and my hep doc at my transplant center say

that to me too. I have cirrhosis from PSC and ductopenia.

What my doc explained what they meant was that years ago no one got

the diagnosis of PSC as early on as we do now with blood work and

ERCP's. Most patients did not know they had it until they were in end

stage liver disease and need a transplant ASAP.

What they said to me was to Just to try to go one living my life to

the fullest as if I did not know about the PSC (easier said than

done).

I also have nearly constant RUQ pain and many days severe fatigue.

What the docs say about that is Well that is part of having PSC and

is most likely will only get worse! Frustrating,huh! I do think it

is frustrating for them too since they don't have much if anything to

help us with PSC.

One day at a time,

PSC 5/07 Listed

>

> I visited my gastro doctor recently to schedule my yearly

colonoscopy.

> I mentioned my fatigue and RUQ pain, as I do every time I see him.

On

> this occasion however, he said to me: " You're young and healthy,

and if

> it wasn't for the lab tests, you wouldn't even know you had liver

> disease. " (My hepatologist has dx me as Stage 2 PSC, by the way).

I

> couldn't believe my ears! I told him I strongly disagreed. My RUQ

> pain is almost constant and the fatigue can be debilitating at

times.

> I've been seeing this doctor for almost 20 years, and respect him a

> great deal. I just can't figure what would make him say that all

of a

> sudden. Maybe he was trying to give me some positive reinforcement

or

> something? He did have an intern with him at the time, so maybe

that

> swayed his judgement; I don't know.

>

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Even though you've seen this doctor for a long time, it's time to get a new doctor, as sooner rather than later. I had a similar experience with a GI doctor, and I'm so glad I changed doctor's. You have too much going on to have such a lame doctor.Marie

To: From: stephenmay@...Date: Sat, 12 Jan 2008 01:33:47 +0000Subject: GI Doctor in Denial

I visited my gastro doctor recently to schedule my yearly colonoscopy.

I mentioned my fatigue and RUQ pain, as I do every time I see him. On

this occasion however, he said to me: "You're young and healthy, and if

it wasn't for the lab tests, you wouldn't even know you had liver

disease." (My hepatologist has dx me as Stage 2 PSC, by the way). I

couldn't believe my ears! I told him I strongly disagreed. My RUQ

pain is almost constant and the fatigue can be debilitating at times.

I've been seeing this doctor for almost 20 years, and respect him a

great deal. I just can't figure what would make him say that all of a

sudden. Maybe he was trying to give me some positive reinforcement or

something? He did have an intern with him at the time, so maybe that

swayed his judgement; I don't know.

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,

I wouldn't read too much into that statement unless you ask him to

clarify and he sticks to his guns. My GP and I laugh that my Hep

always begins his reports with the statement, " Mr. Wise, an otherwise

healthy male,... " . The hep though is excellent and very cognizant of

the PSC symptoms that don't show up in his lab work. Technically, your

doc is probably correct in that any physician doing a cursory physical

on you would confidently pronounce you healthy. I'd just ask him for

clarification next time you're in.

Peace,

Bill Wise

PSC '00, Listed Tx '04

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-

Well said, Bill. My new GI asked if I was SURE I had PSC considering

my absolutely " normal " labs and the fact that most of my

hospitalizations were due to iatrogenic or nosocomial infections.

Penny

-- In , " gmoobad " wrote:

>

> ,

>

> I wouldn't read too much into that statement unless you ask him to

> clarify and he sticks to his guns. My GP and I laugh that my Hep

> always begins his reports with the statement, " Mr. Wise, an otherwise

> healthy male,... " . The hep though is excellent and very cognizant of

> the PSC symptoms that don't show up in his lab work. Technically, your

> doc is probably correct in that any physician doing a cursory physical

> on you would confidently pronounce you healthy. I'd just ask him for

> clarification next time you're in.

>

> Peace,

>

> Bill Wise

> PSC '00, Listed Tx '04

>

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