New Member

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Hello to all.

I just joined this group a few days ago. At least I think I did.

My name is Roy Toutant, my wife has PSC. I have found the internet to

be a great source of information and it is very interesting to hear from so

many people with PSC. Most doctors don't see this disease very often and

don't understand it. It took about a year to intially diagnose her with

PSC, the only initial symptoms were liver function tests that were way out

of range.

From what I can tell, patients with this disease have widely varying degrees

of illness.

is 41 and has known she has PSC for 10 years. She has been listed for

liver transplant for over 2 years as a blood type O status 3 which means she

is probably going to have to wait a lot longer or get sicker before anything

happens. She also has had UC for 25 years which appears to be pretty common

among PSC patients.

She has had 2 bad incidents of GI bleeding but none recently due to

treatment which seems to be helping.

I'll send along the symptoms list later, but it is lengthy. So is the drug

list.

It is interesting that some patients here complain about upper right

quadrant pain, since I think our local GI/Hepatologists don't consider that

a normal PSC symptom. But does have this off and on. I previously

assumed it was related to prior biopsies or some other muscular problem. As

far as I know, the liver organ itself does not have any sensation of pain.

Thanks, Roy T.

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