Re: New poll for

[Guest guest]

Hi Barb

Thanks for that, I see it the poll as a sort of a census. That in

the first week of 2009 this is the state of the PSC discussion group,

(wouldn't it be great if all 1,600 were able to respond).

I agree, as you say, that we cannot count on it, as I was diagnosed

3 years ago, the specialist said he would not be surprised if I had PSC

for 15 to 20 years!

>

> I hope no one is planning their future or banking on the results of

any

> of these polls. While they may be somewhat helpful, you can't count

on

> your course following any information found here.

[Guest guest]

-----Original

Message-----

I was diagnosed 3 years ago, the specialist said he would not be

surprised if I had PSC for 15 to 20 years!

Hi ,

Was he able to tell

you what stage you were in at diagnosis?

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

[Guest guest]

-----Original

Message-----

I was diagnosed 3 years ago, the specialist said he would not be

surprised if I had PSC for 15 to 20 years!

Hi ,

Was he able to tell

you what stage you were in at diagnosis?

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

[Guest guest]

Hi Barb.

Best wishes for a great 2009.

No, he didn't say and I didn't ask what stage I was. I feel pretty

healthy and I think if I was told I was stage 3 or 4 it might

negatively affect how I feel about the state of my health. So I am

working on the principle that I am seen every 6 months and they can

do the worrying about how ill (or not) I am and I will do everything

possible to remain up to date with what is happening in the PSC world

and try to remain healthy.

Sounds like a good idea???

Thanks

> Hi ,

> Was he able to tell you what stage you were in at diagnosis?

>

> Barb in Texas - Together in the Fight - Whatever it Takes!

> Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

>

[Guest guest]

The best way to tell your stage of PSC from what I have read is

through a biopsy, but even that is variable because different parts

of the liver can be worse or better then other parts.

I also think but have found nothing to confirm this that there si a

diffence is symptoms between small duct PSC and large Duct PSC.

I cannot figure out how to get the poll section of this group to

allow us to write in answers, which I think would help to clarify

some things. If some one knows how to do that it might be helpful.

Dawn

>

> > Hi Barb.

> > Best wishes for a great 2009.

> >

> > No, he didn't say and I didn't ask what stage I was. I feel pretty

> > healthy and I think if I was told I was stage 3 or 4 it might

> > negatively affect how I feel about the state of my health. So I am

> > working on the principle that I am seen every 6 months and they

can

> > do the worrying about how ill (or not) I am and I will do

everything

> > possible to remain up to date with what is happening in the PSC

world

> > and try to remain healthy.

> > Sounds like a good idea???

> >

>

[Guest guest]

The only way to stage PSC is with a biopsy; you

are correct in that it only shows what the biopsy “gets”.

The database function is the one way to get actual text in a

response. An example is the PSC Ethnic Heritage database. There’s

a limit to how many columns you can have.

Arne

From:

[mailto: ] On Behalf

Of mdwblaze

The best way to tell your stage of PSC from what I have read

is

through a biopsy, but even that is variable because different parts

of the liver can be worse or better then other parts…