Can I just vent, please... (well + 1 ?)

[Guest guest]

So, about 3 weeks ago I was sick with, I guess, a mild case of a

cholangitis infection. I had all the symptoms except for dark urine

and got better a few days after I started cipro. Well I am down

with it, have been for about a week. And Saturday the pain an

nausea was back in full force and I was miserable. So I called my

hepadoc office and RN told me to go to the ER here in town.

Long story short, my alkp is up even more (higher than mine has ever

been but not as high as some ofyour guys' are) and the ER actually

accused me off being a drug seeker. The ER doc said my blood work

was fine (it's NOT) and muttered something under her breathe and

said " this should keep you happy " and handed me a script for

percocet. I looked at her, ripped up the script threw it at her and

told her I wasn't " looking for drugs, I'm looking for answers.

Somethings wrong and I'm tired of feeling like this. I was told to

come here by my specialist, call him " then she stood there with a

dumb look on her face and I walked out.

So, I faxed my hepadoc the labs today and he's going to call in the

morning. I'm not that ill, I get it, but I'm freaking miserable. I

told hepadoc about the abdominal swelling too and he said that I

should probably come in soon. It's been 3 months since my dx and

was planning on seeing him in 3 more months. It's okay though.

I've met my max out of pocket expense for this year so it will be a

free visit (YAY!).

Thanks for " listening " It's so frustrating sometimes you know.

My one questions....does an increase in pain mean that the disease

is progressing, or not always.

Thanks guys!!!!!!

PSC 8/07

[Guest guest]

---

>

> My one questions....does an increase in pain mean that the disease

> is progressing, or not always.

Hi

I was wondering how you were getting on.....good on you for standing

your ground. I am wondering what drugs the ER Doctor thought you were

looking for, as all I have ever got is antiboitics! I hope your

hepadoc is able to help and very soon.

Sorry can't help with the pain progressing, the only thing I have

noticed is that I am getting fatigued easier.

Best wishes and do keep us informed us on how you are going.

from the bottom of the world in New Zealand.

[Guest guest]

>

> So, about 3 weeks ago I was sick with, I guess, a mild case of a

> cholangitis infection. I had all the symptoms except for dark

urine

> and got better a few days after I started cipro. Well I am down

> with it, have been for about a week. And Saturday the pain an

> nausea was back in full force and I was miserable. So I called my

> hepadoc office and RN told me to go to the ER here in town.

>

> Long story short, my alkp is up even more (higher than mine has

ever

> been but not as high as some ofyour guys' are) and the ER actually

> accused me off being a drug seeker. The ER doc said my blood work

> was fine (it's NOT) and muttered something under her breathe and

> said " this should keep you happy " and handed me a script for

> percocet. I looked at her, ripped up the script threw it at her

and

> told her I wasn't " looking for drugs, I'm looking for answers.

> Somethings wrong and I'm tired of feeling like this. I was told

to

> come here by my specialist, call him " then she stood there with a

> dumb look on her face and I walked out.

>

> So, I faxed my hepadoc the labs today and he's going to call in

the

> morning. I'm not that ill, I get it, but I'm freaking miserable.

I

> told hepadoc about the abdominal swelling too and he said that I

> should probably come in soon. It's been 3 months since my dx and

> was planning on seeing him in 3 more months. It's okay though.

> I've met my max out of pocket expense for this year so it will be

a

> free visit (YAY!).

>

> Thanks for " listening " It's so frustrating sometimes you know.

>

> My one questions....does an increase in pain mean that the disease

> is progressing, or not always.

>

> Thanks guys!!!!!!

>

>

> PSC 8/07

>hi mellissa

my daughter has frequent bouts with the pain. the dr;s all say

that she can't be having pain in her liver as there are no nerves

found there.i believe they really don't know everything .when the

pain radiates to her shoulers,is when she usually has an episode

coming on.she is lucky to have a great pcp.wish you well.c

[Guest guest]

I hope you feel better soon.LeeSo, about 3 weeks ago I was sick with, I guess, a mild case of a cholangitis infection. I had all the symptoms except for dark urine and got better a few days after I started cipro. Well I am down with it, have been for about a week. And Saturday the pain an nausea was back in full force and I was miserable. So I called my hepadoc office and RN told me to go to the ER here in town. Lo

[Guest guest]

She thought I was just in there to get pain pills I guess, that's what

percocet is. I'm waiting for my hepadoc to call me. Just got off the

phone with his assistant so we'll see.

[Guest guest]

The only time I had intense pain was when fungal masses (due to long

term sulfa use) were blocking ducts. I felt the pain along the

midline of my back contrary to what most feel and I was sent to the

ER. Thankfully, my doctor called ahead and I was treated quickly and

with respect. I was given IV morphine and I can honestly say that it

made me feel awful although it did relieve the pain. I cannot imagine

how anyone would seek it out -- YUK. In the future, could your

doctor call the ER ahead of your arrival? I suspect that not many ER

doctors encounter PSC patients, but do meet drug seekers on a daily basis.

Penny

> And Saturday the pain an

> nausea was back in full force and I was miserable. So I called my

> hepadoc office and RN told me to go to the ER here in town.

>

>

> PSC 8/07

>