Conflicting opinions on PSC

[Guest guest]

Just want to thank those who are helping me get through this. We

spoke with the Gi doc that found the PSC from the cat scan and asked

some question. Come to find out his daughter just had a liver tx but

from another hospital in another state. Forgot to ask why. I also

sent a copy of the cd from from the cat scan to another gi doc who

had their radiologist read it and he said he didn't see PSC but saw

crohns which was diagnosed 4 weeks ago. Funny the hospital that

found the PSC didn't see the crohns. Strange!!! I spoke with my

local GI and he suggested getting an abdominal sono, MRI and MRCP (s

[specificity and sensitivity of 85-95%) and if the results are

positive get the ERCP. I am so confused my head is spinning an I

have been having anxiety attacks. I do not have any elevations in my

LFTs, and have crohns. I am hoping it is something else. Some

questions I have for all you vets out there:

1. Should I make an appt with a hepatologist. Anyone know any in NY

city?

2. Why is my spleen slightly prominent?

3. Does PBC have anything to do with scattered slightly prominent

mesentric lymph nodes? (from the cat scan as well)

4. Do you need a transplant with small duct PSC ?

5. What are low desitiy foci within the liver?

thanks so much !!

[Guest guest]

Hey ,

I used to see a guy by the name of Dr. Jaffe at Mount Sinai hospital

in New York city. I thought he was a really good GI. I can't really

answer your other questions. But good luck!

Jarad

>

> Just want to thank those who are helping me get through this. We

> spoke with the Gi doc that found the PSC from the cat scan and

asked

> some question. Come to find out his daughter just had a liver tx

but

> from another hospital in another state. Forgot to ask why. I also

> sent a copy of the cd from from the cat scan to another gi doc who

> had their radiologist read it and he said he didn't see PSC but saw

> crohns which was diagnosed 4 weeks ago. Funny the hospital that

> found the PSC didn't see the crohns. Strange!!! I spoke with my

> local GI and he suggested getting an abdominal sono, MRI and MRCP (s

> [specificity and sensitivity of 85-95%) and if the results are

> positive get the ERCP. I am so confused my head is spinning an I

> have been having anxiety attacks. I do not have any elevations in

my

> LFTs, and have crohns. I am hoping it is something else. Some

> questions I have for all you vets out there:

> 1. Should I make an appt with a hepatologist. Anyone know any in

NY

> city?

> 2. Why is my spleen slightly prominent?

> 3. Does PBC have anything to do with scattered slightly prominent

> mesentric lymph nodes? (from the cat scan as well)

> 4. Do you need a transplant with small duct PSC ?

> 5. What are low desitiy foci within the liver?

>

> thanks so much !!

>

>

[Guest guest]

,

I was getting the run around for my diagnosis too. I finally looked

at the nearest big university's website, found the cheif

hepatologist and emailed him. He called me and had me come in the

next day.

So Yes, I would say find a hepatologist. It's better than running

around in circles and getting no where.

My spleen is also enlarged. My hepa explained it to me but I don't

remember what he said. It has to do with the liver disease though.

And at one time I had " mesenteric adenopathy " which is swollen lymph

nodes in my abdomen. I was told I may have leukemia and sent to an

oncologist. They said I was fine and I now think it's because my

body was just junking out because of my liver. That was before i

was dx.

Good luck! I know how frustrating it is.

PSC 8/07

--- > 1. Should I make an appt with a hepatologist. Anyone know any

in NY

> city?

> 2. Why is my spleen slightly prominent?

> 3. Does PBC have anything to do with scattered slightly prominent

> mesentric lymph nodes? (from the cat scan as well)

> 4. Do you need a transplant with small duct PSC ?

> 5. What are low desitiy foci within the liver?

>

> thanks so much !!

>

>