small duct PSC

[Guest guest]

I still have a few questions regarding small duct PSC. How exactly

will they be able to dx it-the ERCP's have shown inconclusive. The

liver biospy normal, although when they removed 's gall bladder

they found that his liver has a white web casing over it. Very

strange??? Should I ask for a test that would show up antimitochondial

antibodies, and if so what test is that? Should we ask for an MRI or

CatScan? He has had plenty of ultra sounds when we have gone to the ER

to see if liver is enlarged or stones etc. I understand that it is

hard to dx small duct PSC, but how does it evenually show itself,

through what test do they see it in the small ducts. We have a

doctors appointment every 3 months and I want to ask. I think I am

grateful that each " episode " of cholangistis, his liver enzymes goes

totally back to normal within a week. We have never been able to get

's cholestrol under control but with Steel Cut Oatmeal and as

much exercise as he is able when well, we finally in 12 years have it

normal. Just a suggestion if anyone needs help in that area. I cooked

a big batch and we heat alittle up each morning. Put ground flaxseed

on top and more Omega 3!!!

Is anyone dx with small duct PSC? Would appreciate any guidance or

research that is available. Thanks Pamela

[Guest guest]

Yes, I suggest have the AMA blood test if this is positive he may

have PBC, and not PSC, there is more information available on Primary

Biliary Sclerosis (PBC) than PSC. There have been more clinical drug

trials on it too. I also believe he should have an MRI. I have been

recently diagnosed with PSC, and since I am a nurse have had several

discussions with the docs at my hospital. People with PBC tend to have

high cholestrol that is difficult to control. Hope this is helpful.

Good Luck,

>

> I still have a few questions regarding small duct PSC. How exactly

> will they be able to dx it-the ERCP's have shown inconclusive. The

> liver biospy normal, although when they removed 's gall bladder

> they found that his liver has a white web casing over it. Very

> strange??? Should I ask for a test that would show up antimitochondial

> antibodies, and if so what test is that? Should we ask for an MRI or

> CatScan? He has had plenty of ultra sounds when we have gone to the ER

> to see if liver is enlarged or stones etc. I understand that it is

> hard to dx small duct PSC, but how does it evenually show itself,

> through what test do they see it in the small ducts. We have a

> doctors appointment every 3 months and I want to ask. I think I am

> grateful that each " episode " of cholangistis, his liver enzymes goes

> totally back to normal within a week. We have never been able to get

> 's cholestrol under control but with Steel Cut Oatmeal and as

> much exercise as he is able when well, we finally in 12 years have it

> normal. Just a suggestion if anyone needs help in that area. I cooked

> a big batch and we heat alittle up each morning. Put ground flaxseed

> on top and more Omega 3!!!

> Is anyone dx with small duct PSC? Would appreciate any guidance or

> research that is available. Thanks Pamela

>

[Guest guest]

Unfortunately it can take years to get a solid diagnosis of small duct PSC, since there isn't a good test for it. If you have symptoms of PSC, and at some point you have elevated LFTs, and the ERCP is normal, and you have ulcerative colitis (or crohn's), there's a good chance you have small duct PSC. The good news is that the outcome is usually quite a bit better than for regular PSC. However, small duct PSC often becomes regular PSC. Go to the PSC literature.org web site and do a search of small duct PSC to learn more.

Marie

To: From: heartrn45@...Date: Mon, 29 Oct 2007 23:43:00 +0000Subject: Re: small duct PSC

Yes, I suggest have the AMA blood test if this is positive he mayhave PBC, and not PSC, there is more information available on PrimaryBiliary Sclerosis (PBC) than PSC. There have been more clinical drugtrials on it too. I also believe he should have an MRI. I have beenrecently diagnosed with PSC, and since I am a nurse have had severaldiscussions with the docs at my hospital. People with PBC tend to havehigh cholestrol that is difficult to control. Hope this is helpful. Good Luck, >> I still have a few questions regarding small duct PSC. How exactly> will they be able to dx it-the ERCP's have shown inconclusive. The> liver biospy normal, although when they removed 's gall bladder> they found that his liver has a white web casing over it. Very> strange??? Should I ask for a test that would show up antimitochondial> antibodies, and if so what test is that? Should we ask for an MRI or> CatScan? He has had plenty of ultra sounds when we have gone to the ER> to see if liver is enlarged or stones etc. I understand that it is> hard to dx small duct PSC, but how does it evenually show itself,> through what test do they see it in the small ducts. We have a> doctors appointment every 3 months and I want to ask. I think I am> grateful that each "episode" of cholangistis, his liver enzymes goes> totally back to normal within a week. We have never been able to get> 's cholestrol under control but with Steel Cut Oatmeal and as> much exercise as he is able when well, we finally in 12 years have it> normal. Just a suggestion if anyone needs help in that area. I cooked> a big batch and we heat alittle up each morning. Put ground flaxseed> on top and more Omega 3!!!> Is anyone dx with small duct PSC? Would appreciate any guidance or> research that is available. Thanks Pamela> Windows Live Hotmail and Microsoft Office Outlook – together at last. Get it now!