Re: what can cause secondary PSC/

[Guest guest]

,

Hi! Welcome to the group. I'm so glad you found us. It seems as though you

could use some pals right now who understand what you're going through and

you've definitely come to the right place for that. Please feel free to ask us

anything at any time. Chances are someone in the group will either have an

answer or be able to commiserate!

Sometimes PSC diagnoses are difficult to make and waiting to hear can be

incredibly frustrating. I don't think the doctors understand that for most

patients it's a relief to get a name as to what's happening to them even if

what's happening is awful. I think out of a misguided effort to ease our worry

(and prevent lawsuits), sometimes diagnosis confirmation can take a bit longer

than anyone would like.

You asked about nicking during an ERCP. Pancreatitis is the most common problem

with ERCPs and, as you now know, is extremely unpleasant. I'm not exactly sure

where in the duct/what you meant by nicking, but I can tell you that it is a

possibility. After an ERCP one time, I ended up with a huge knot on my lower

chest/upper abdomen. The doctors explained that it would go away in time that

it was as a result of the " tube " banging into me/nicking me as they tried to get

it in. (That's not an exact translation, but close enough to give you the

idea). True to their word, it took a few weeks, but the knot did go down.

There are some other tests such as the MRCP that can also be used. In fact, in

a lot of areas, the MRCP is starting to be used more widely than ERCP.

As to liver transplant, it certainly is a possibility with this disease. PSC

progresses different in every patient. To make matters even more confusing, we

don't even all manifest the same symptoms (although fatigue and itching and

right upper quadrant pain seem to be the most common complaints). My best

advice to you would be to be vigilant and aware about your health, but don't let

it overtake your emotions and your common sense. Not every migraine or cold or

virus means PSC or that the end is coming, but if you're concerned about

anything that happens, don't hesitate to call and ask your doctor. It's far

better to be laughed at than to have something truly wrong and not get the help

you need.

Since you're new to the world of PSC and this site, you may not have heard about

our upcoming PSC conference yet. It's taking place this May 1-3 in Chicago,

Ill. It's a great place to come face to face with other PSCers, doctors and

leading researchers in the field. If you'd like more information on the

conference, you can either contact me or check out the information posted at

www.pscpartners.org.

Again, welcome to the group and as I said earlier, please don't hesitate to

contact us with any questions that you might have. We're definitely here for

you if you need us!

Sandi in VA