RE: how long have you.....

[Guest guest]

" Just lil ole me! " wrote:

>

> Just curious... how many of us have had PSC over 10 years like myself?

let's see diagnosed dec. of '91 and now it's '02 so it's been a bit over

10 yrs since diagnosis. Like most of us I probably had the disease for

a least a few years before diagnosis..

athan

[Guest guest]

" Just lil ole me! " wrote:

>

> Just curious... how many of us have had PSC over 10 years like myself?

let's see diagnosed dec. of '91 and now it's '02 so it's been a bit over

10 yrs since diagnosis. Like most of us I probably had the disease for

a least a few years before diagnosis..

athan

[Guest guest]

according to my husband jim's liver doctor (based on his careful perusal of

years and years of bloodwork ordered by the internist who cared for jim

during his UC, which was first dx'd back in '84), it is now believed jim had

PSC for many years prior to his actual '97 dx.... perhaps since '84, along

with the onset of UC.

maureen

how long have you.....

Just curious... how many of us have had PSC over 10 years like myself?

[Guest guest]

Hi there,

I was only diagnosed last fall, but my MDs all agree

that I've likely had it for the past 10 years. Don't

know if that is what you meant.

Colleen in Boston

how many of us have had PSC over 10

> years like myself?

>

>

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[Guest guest]

I was dx with PSC in 93 but I started having symptoms

in 90, the doctors just didn't know what it was. So

I've had this for almost twelve years now.

Beverly

--- Just lil ole me! wrote:

> Just curious... how many of us have had PSC over 10

> years like myself?

>

>

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[Guest guest]

Arne,

That would make sense. My first elevated LFT was

recorded in November 1990 and the Dx was almost

exactly 10 years later. The crazy thing is I really

didn't have symptoms - except for fatigue, but with

UC, that is what I thought was causing it. The itching

started this fall/winter. At first I thought it was in

my head, but after 6 months on Enbrel and a week off,

I know now that the itching is very real!

My MD's also say that I am somewhere between stages 1

and 2. If that is the case, then I shouldn't need a

transplant until I'm in my 50's or 60's. By that time

I hope there are drug therapies or organ generation

will be vastly improved. I'm holding out for total

remission and reversal of bile duct damage!

Colleen

--- Arne wrote:

> Colleen - they said the same about me (probably have

> had it for 10 years).

I

> believe that the rule of

> thumb is, you've had it for 10 years by the time you

> show symptoms, unless

> it's an extremely fast moving case (some of these

> are no longer with us):

>

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[Guest guest]

Guys and Gals, my first elevated LFT's were 5/97, with

PSC dx in 8/97 via ERCP. My first physical symtpoms

were 6/00. The reason I know exactly when my LFT's

elevated was because I was on Imuran for UC and I was

having bi-weekly blood tests.

=====

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms

2000)

[Guest guest]

I donated blood to the red cross and got a punt letter

from them that read they would no longer accept

donations from me because of the elevated LFT's and

that it was caused either by:

severe obesity (I weighted 115 pounds at the time)

heavy drinking (I went out with friends maybe once a

week)

liver disease (Scared the bejesus out of me)

We thought it was a malfuntioning gall bladder (had it

removed and the numbers plunged to normal range.)

Colleen

--- wrote:

> My first physical symtpoms

> were 6/00. The reason I know exactly when my LFT's

> elevated was because I was on Imuran for UC and I

> was having bi-weekly blood tests.

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