primary sclerosing cholangitis and new doctor

i saw a new gastro today. not my idea but my mother forced me to go. the doctor was going over all my bloodwork over the past 2 years and thinks i have primary sclerosing cholangitis. he said it usually happens to UC patients but there is no known cause. i started to cry when he told me this because if it gets bad, a liver transplant is the typical treatment. i just figured having UC was bad enough. why do all these other problems have to happen? i am getting some special liver test done on saturday along with more bloodwork than i've ever seen- 12 vials.

and of course, i did ask him about getting an LDN prescription. i told him about the improvements i've been seeing and he says "i think it's just luck and not the medicine. my patients have had no improvement on LDN so i refuse to prescribe it anymore." i told him i'd tried to see jill smith and he said she is not practicing medicine anymore- she's taking an administrative position and leaving hershey. bummer.

so it wasn't exactly a good appointment. he kept asking me about eating meat and saying i should eat turkey and chicken wings since they really aren't meat like beef. i'm not sure what that means but i told him no. this guy is supposed to be the top rated gastro in pittsburgh but he was definitely not open to anything i said.

What exactly is the liver test you'll be having? If it's an ERCP, I would suggest you find out....and put it off until you have the MRI (MRCP).

If the doc suspects based on whatever, do the blood tests, the MRCP, then if you need to remove blockage, have the ERCP afterward.

I can relate to how you feel at this point.

q

quincy, that's the one! the MRCP. i'm not sure what it is at all but i'm getting it tomorrow. have you had one before?

i was just really surprised because he said his reason for thinking i have PSC is due to bloodtests from the past 2 years. i remember in jan. 2011 i had some weird numbers and the doctor did a liver ultrasound and said everything looked good. nothing was ever said after that and i've been to 2 other doctors and had bloodwork done frequently.

seconder, thanks for making me feel better. i had never heard of this problem before and the doctor just sounded so sure that i have it. i never have any pains in my liver area so im curious to see if the test finds anything.

killcolitis, great post. i never knew you could stay on antibiotics forever, esp. since i've heard vanco. is a strong one. i know the nurse prescribed some medicine for my bile ducts. i have to pick it up today but i can't remember the name at the moment. she prescribed like 6 different things.

That sucks, Johanna Banana.....****ing diseases. No cure this, unknown cause that...**** them.

Sorry Joanna, even though your doc is saying no to LDN, maybe you could continue with it through another doc? Go with what you feel maybe? Despite everything your going through, keeping your head up, your doing everything you can to help yourself, you can only move forward from here. :)

Joanna,
recently I bought a book "Charcoal remedies", there is also a whole site about activated charcoal and what it can be used for. Anybody who have a problem with liver or kidney function should read it.
People who said they tried charcoal before and did not notice a difference, most likely did not take enough of it. According to the book a person who is taking activated charcoal for something more serious than gas/bloating need to take 1-2tablespoon of the activated charcoal per day in the divided doses between the meals. I have known about charcoal all my life and took it many times over the years but I have never taken that much of it in one day.
Another way to use activated charcoal is to make poultice by mixing some charcoal with some water, put it on the paper towel or some flannel cloth, put it over the liver, put a clear plastic wrap over it. Tape the edges with some surgical tape and leave it over night. Repeat it every night for 1-2 weeks. It should improve the liver function and return it to normal.
The main thing is to get pure activated charcoal in powder form for poultices. For internal use it is easier to use capsules, just take at least 20 grams minimum per day.

Here is some more information of how activated charcoal helped different people with liver diseases: http://www.charcoalremedies.com/liver_disease

I have had PSC since 1999.  I actually was diagnosed with that, and then UC.  You cannot tell if someone has PSC just by looking at their bloodwork.  Have you found out what you are having done?  I think that a liver biopsy or ERCP would be the next step. 

I am curious what labs you had drawn, and what were they?  I usually always have very low white and red blood cell counts, and everything related to low immunity. 

My AST and ALT are usually in the 40-60 range, but when I was first diagnosed they were very high.  That was the first sign that something was wrong. 

I hope that everything turns out well for you. 

Yes.....but I give common sense suggestions.

q

hey guys. just got back from the liver test- MRCP. it didn't go well. nobody was able to get an IV in me. obviously, i was very dehydrated because i had to fast for the test so it was definitely a problem. my veins are really bad to begin with and fasting just makes it worse. i fainted after about 20 IV attempts but luckily i fell on my mom's lap. the bloodwork yesterday was a cinch because i had 5 cups of liquid before i went in.

the radiologist ended up doing the MRI but without the contrast dye for the bile ducts. she said maybe i won't need to get it done but if i need to, there gonna do a pic line, which sucks. it was really hard being in the machine for so long because i started getting cramps. i beeped the girl while i was in the machine asking her how long i'd be in here and it was 35 minutes. she said the other part of the test takes an hour. i don't know if i can last that long!

i'm not sure exactly what all my bloodwork is. i've never gotten so much done before. he's doing a ton of liver function tests, thyroid, heavy metals, proteins, nutrients, etc. it was a very long list- 10 pages long.

quincy, yeah you're right. i think my body needed some time to recover after all my lovely blood donations yesterday. the iv team lady came in today and just said she didn't wanna torture me anymore. i could tell all of them felt bad (there were 3 people trying) but i was honestly so faint from not eating/drinking that i just felt like a pincushion.

yeah, i thought it was weird about the timing. the MRI itself today was 35 minutes and when i asked the radiologist how long i'd be in next time for the contrast, she told me at least an hour.

i'm just hoping my doctor can see enough from the MRI that maybe i won't need to go back in again. that would be lucky. the last time i had a dye-contrast test, the dye leaked into my hand and my entire left hand and arm was blown up for about 3 weeks. i actually have a picture of it because it looked like a baseball mitt!

GG...In 1999, there was no MRCP available (it was suspect I had it in 1998). You were already in crisis, seems the thing to do at that point. As well, considering your age....

What meds are you on at this time?

There have been a few on here who've had multiple ERCPs AND liver biopsies and no confirmed diagnosis...omg. There are risks..

PSC, NO CURE, FATAL, but not terminal. Not good enough testing that isn't invasive. Possible cirrhosis...there are ways, and with the possibility of triggering it into full gear, not a thing I was willing to go through.

If I didn't read an opinion of a doctor's perspective on that aspect, I would have probably ended up having one.

It's not confirmed what I have....blood testing says PBC...MRCP said looks like PSC. While URSO has taken down the liver enzymes, the next MRCP 5 years later, characteristics hadn't changed at all.

So, unless I have anomalies that are some collapsing of the CBDuct.....the blood testing for probable PBC is still positive.

My thoughts are to keep my UC in control in general...since we don't know what causes either, autoimmune is still a part of what I've got.

I will not have an ERCP unless I'm in crisis, and it doesn't matter since there's nothing that will cure either.

Not to say that the ERCP isn't a good test or the liver biopsy....but invasive can cause other problems that I wasn't willing to even go near....and I believe that others should at least have some options and know what's available.

q

quincy, yeah, the test was VERY loud. they gave me earplugs to wear thankfully haha if i hadn't had those, i would've had hearing loss i'm sure. the thing they placed on top of me was pretty heavy and i had problems holding my breath for the last 3 times. it's really a lung workout and i have asthma. i've never been able to hold my breath for very long so i don't know how well the test actually went.

they were doing the iv in the arm in the same spots where i gave blood. both my arms are really bruised already so i'm guessing the veins were collapsed or something. it's always the inner elbow area where i get bloodwork done. they didn't attempt my hands because they said it wasn't a good idea.

i've been checking online for my bloodwork and results constantly!! i like knowing stuff right away but nothing is up yet. i've noticed quest diagnostics takes a little while for bloodwork- usually a week for mine.

i didn't know you could get a cd of your test. i will have to ask my GI for it.

herbgarden..Good suggestion regarding PSC Partners. I've not been on there since before my computer crashed months ago, I should put it in my faves again.

q