Severe PSC itching

[Guest guest]

Hi Everyone

Joined the group last year but had to stop, as I had a mis-diagnosis

and was told I did not have PSC (orig diag in 1999 w/ poss Sm

Duct). Well my itching condition has continued to get worse over

the last 5 years to where is is now totally unbearable (24-7). I

finally decided to see a Liver doc at UCSF in Feb; had an ERCP done

again in March & was diagnosed w/ classic PSC (all bile ducts in

liver are scarred & affected). Well that certainly cleared up alot

of confusion. Have tried every med. for this condition & some

worked in the beginning but no longer are effective and my life is a

living nightmare. Saw the Dr. again on 4-18-07 & he's sending me

for a pre-test eval. for being placed poss. on tx list. The itch is

intense all over my body in add. to horrible imbedded itching in

feet, ank, leg, knees, thighs, etc. Also, I'm not able to eat any

food or drink other than chick., pot., plain lettuce & onion as it

seems to bring on more attacks or aggravate PSC esp. in the lower

leg, ft., etc area. So I'm down to 85 lbs (hgt 5'4 " ) (was prev.

able to eat all foods up until 2005). My question is this. The

doctor has never heard of anyone w/this disease that has had prob

w/food aggravating the pruitis from psc. Has anyone out there ever

had this kind of a prob. I'm afraid to eat or drink anything as it

will further add on more attacks & my leg, ank, ft are completely

tore up w/huge gouges out of the skin. I'm afraid that they might

turn me down for the tx list if they have any doubt that any of the

itching is from something else.(I'm certain its from the psc)I've

been checked for just about everything including an allergy test and

yes I am now allergic to some foods but even the foods that I'm not

allergic too seem to aggravate psc itch. Anyway if anyone has

experienced any thing like this would love to hear from you. Sorry

this is so long...Jan