Re: Just diagnosed, my story, and questions

[Guest guest]

-I am sorry to hear of your dx, but glad you found this group.All your symptoms are right there in line with what my brother faced with PSC, only he does have UC. I am happy to report that he is 3 month post transplant and is doing fantastic. I would welcome you to read the blog I kept of his ordeal if you like, it goes back to Nov. 2006 I believe. But you can visit it at www.savedusty.blogspot.com. The updates are few and far between-but that is because he is doing so well.

But before this, like so many others, he was on a roller coaster. But do keep in mind, others (that I am sure to pop out in time) have lived many many years with only occasional issues with PSC. The best thing you can do is ask lots of questions. Don't be afraid to ask them, this group is a vast pool of unconditional support & knowledge.

Welcome! in TexasBrother, , UC & PSC, liver transplant 12-12-07

Hi everyone,

My name is , and I will be turning 44 in two weeks. This last

Wednesday I received confirmation that I do, in fact, have PSC. In

November of 1991, I ended up in the ER with my liver enzymes going

through the roof, excruciating pain, and jaundice.

[Guest guest]

-I am sorry to hear of your dx, but glad you found this group.All your symptoms are right there in line with what my brother faced with PSC, only he does have UC. I am happy to report that he is 3 month post transplant and is doing fantastic. I would welcome you to read the blog I kept of his ordeal if you like, it goes back to Nov. 2006 I believe. But you can visit it at www.savedusty.blogspot.com. The updates are few and far between-but that is because he is doing so well.

But before this, like so many others, he was on a roller coaster. But do keep in mind, others (that I am sure to pop out in time) have lived many many years with only occasional issues with PSC. The best thing you can do is ask lots of questions. Don't be afraid to ask them, this group is a vast pool of unconditional support & knowledge.

Welcome! in TexasBrother, , UC & PSC, liver transplant 12-12-07

Hi everyone,

My name is , and I will be turning 44 in two weeks. This last

Wednesday I received confirmation that I do, in fact, have PSC. In

November of 1991, I ended up in the ER with my liver enzymes going

through the roof, excruciating pain, and jaundice.

[Guest guest]

-I am sorry to hear of your dx, but glad you found this group.All your symptoms are right there in line with what my brother faced with PSC, only he does have UC. I am happy to report that he is 3 month post transplant and is doing fantastic. I would welcome you to read the blog I kept of his ordeal if you like, it goes back to Nov. 2006 I believe. But you can visit it at www.savedusty.blogspot.com. The updates are few and far between-but that is because he is doing so well.

But before this, like so many others, he was on a roller coaster. But do keep in mind, others (that I am sure to pop out in time) have lived many many years with only occasional issues with PSC. The best thing you can do is ask lots of questions. Don't be afraid to ask them, this group is a vast pool of unconditional support & knowledge.

Welcome! in TexasBrother, , UC & PSC, liver transplant 12-12-07

Hi everyone,

My name is , and I will be turning 44 in two weeks. This last

Wednesday I received confirmation that I do, in fact, have PSC. In

November of 1991, I ended up in the ER with my liver enzymes going

through the roof, excruciating pain, and jaundice.

[Guest guest]

Wow you and and are mirror images. Gallbladder sludge that caused my gastro to remove the gallbladder. No IBD or UC myself. Tons of issues with sleeping and this is coming from a gal that LOVED to sleep, can't fall asleep at night. I was diagnosed about two weeks ago, and I have been having trouble with a few things, sleeping, as I mentioned is one of them. Of course I can't turn my brain off, but that is too be expected I would suppose. In July I had an incident where i turned Jaundice, had a high fever and chills and plenty of pain, that was bad, but I am happy to say has not returned (yet?). I am also gaining weight, I am on a diet of sorts now to try to lose the weight, but everywhere i read, PSC causes weigh loss, although I am sure that is in the later stages. I have recently been put on 50,000 ius of Vitamin D once a week for a huge Vitamin

D definincy and I have had major anxiety, I have had to have my meds uped in the past month so that I can function without freaking out. My words seem to get jumbled in my head and come out of my mouth making little to no sense. I thought all of this was just because I am always different, can't have a single thing about me that is normal. Like you I try to keep a sense of humor, but what I have found out is that I have to mourn a little bit, or I lose it every now and then, and that is not fair to my family. We are diagnosed at a good time, if that is possible, but I mean medicine is changing a lot and I have hope for all of us. With that said, I also know how things can turn out, and I let the reality of each situation make an appearance in my life, but then turn back to the positive. As a matter of fact, this group is very positive, you can ask them

(us) anything and someone will have been there before...... Take care of yourself, I think at this point that is best we can do. you are in my thoughts and prayers. brandilregener wrote: Hi everyone,My name is , and I will be turning 44 in two weeks. This lastWednesday I received confirmation that I do, in fact, have PSC. InNovember of 1991, I ended up in the ER with my liver enzymes

goingthrough the roof, excruciating pain, and jaundice.I have had problems with cholangitis since 1991, but at the time, myhepatologist believed it was my Odie sphincter that was causing theproblems. In January 1992, I had an ERCP, which had to be abruptlyaborted due to an immediate onsent of pancreatitis (which landed me inthe hospital for 10 days). So they never were really able to confirmwhich duct was the problem. I have several gastros that wanted totake out my gallbladder, which over the years has been perfectlyhealthy (and I still have it), but they found through so much testingthat I made huge cholesterol crystals. I have undergone so many testsregarding my gallbladder, and liver ultrasounds, continuous monitoringof my blood, etc. And because I was asymptomatic for so long, Ithought I was fine.... But now I see I was ignorant of what liverdisease is all about.Around 7 years ago, I began having

terrible right flank pain, RQP, andterrible stomach pain. Since it came and went (sometimes lasting 1/2hour and other times lasting hours), I didn't do anything about it. Ijust thought it was sludge, and I would get over it. When I couldn't take it anymore, I went back to my hep at UCLA(wonderful guy - he refused to let any gastros take my gallbladder orhave any other unnecessary procedures). He ordered an MRCP for me,which provided a definite diagnosis of PSC. I am now undergoing therest of the testing, which I am sure is all too familiar to the restof you.What causes me to think that I may be an atypical presentation is thatI don't have any UC/IBD type disorders. Actually, I have been gainingweight (which is really bad). I am extremely fatigued, I have an extreme Vitamin D deficiency,issues with my stool, and terrible GERD, which I know are all part ofthis disease.So now the questions... Have

any of you experienced changes in yourwrist bones, shortness of breath, the atypical weight gain,panic/anxiety attacks, word salad, and insomnia? Because those arethe other issues that I have been dealing with, and I know the livercan wreak havoc on your system if it is not functioning properly.I am trying to keep a very positive outlook, and trying to maintain asense of humor (because I don't know what I'd do without that), butboy I sure would love to know if anyone else has experienced any ofthe other weird symptoms I am concurrently experiencing.Thank you so much for taking the time to read my lengthy first post. With my gratitude, I look forward to your feedback.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Wow you and and are mirror images. Gallbladder sludge that caused my gastro to remove the gallbladder. No IBD or UC myself. Tons of issues with sleeping and this is coming from a gal that LOVED to sleep, can't fall asleep at night. I was diagnosed about two weeks ago, and I have been having trouble with a few things, sleeping, as I mentioned is one of them. Of course I can't turn my brain off, but that is too be expected I would suppose. In July I had an incident where i turned Jaundice, had a high fever and chills and plenty of pain, that was bad, but I am happy to say has not returned (yet?). I am also gaining weight, I am on a diet of sorts now to try to lose the weight, but everywhere i read, PSC causes weigh loss, although I am sure that is in the later stages. I have recently been put on 50,000 ius of Vitamin D once a week for a huge Vitamin

D definincy and I have had major anxiety, I have had to have my meds uped in the past month so that I can function without freaking out. My words seem to get jumbled in my head and come out of my mouth making little to no sense. I thought all of this was just because I am always different, can't have a single thing about me that is normal. Like you I try to keep a sense of humor, but what I have found out is that I have to mourn a little bit, or I lose it every now and then, and that is not fair to my family. We are diagnosed at a good time, if that is possible, but I mean medicine is changing a lot and I have hope for all of us. With that said, I also know how things can turn out, and I let the reality of each situation make an appearance in my life, but then turn back to the positive. As a matter of fact, this group is very positive, you can ask them

(us) anything and someone will have been there before...... Take care of yourself, I think at this point that is best we can do. you are in my thoughts and prayers. brandilregener wrote: Hi everyone,My name is , and I will be turning 44 in two weeks. This lastWednesday I received confirmation that I do, in fact, have PSC. InNovember of 1991, I ended up in the ER with my liver enzymes

goingthrough the roof, excruciating pain, and jaundice.I have had problems with cholangitis since 1991, but at the time, myhepatologist believed it was my Odie sphincter that was causing theproblems. In January 1992, I had an ERCP, which had to be abruptlyaborted due to an immediate onsent of pancreatitis (which landed me inthe hospital for 10 days). So they never were really able to confirmwhich duct was the problem. I have several gastros that wanted totake out my gallbladder, which over the years has been perfectlyhealthy (and I still have it), but they found through so much testingthat I made huge cholesterol crystals. I have undergone so many testsregarding my gallbladder, and liver ultrasounds, continuous monitoringof my blood, etc. And because I was asymptomatic for so long, Ithought I was fine.... But now I see I was ignorant of what liverdisease is all about.Around 7 years ago, I began having

terrible right flank pain, RQP, andterrible stomach pain. Since it came and went (sometimes lasting 1/2hour and other times lasting hours), I didn't do anything about it. Ijust thought it was sludge, and I would get over it. When I couldn't take it anymore, I went back to my hep at UCLA(wonderful guy - he refused to let any gastros take my gallbladder orhave any other unnecessary procedures). He ordered an MRCP for me,which provided a definite diagnosis of PSC. I am now undergoing therest of the testing, which I am sure is all too familiar to the restof you.What causes me to think that I may be an atypical presentation is thatI don't have any UC/IBD type disorders. Actually, I have been gainingweight (which is really bad). I am extremely fatigued, I have an extreme Vitamin D deficiency,issues with my stool, and terrible GERD, which I know are all part ofthis disease.So now the questions... Have

any of you experienced changes in yourwrist bones, shortness of breath, the atypical weight gain,panic/anxiety attacks, word salad, and insomnia? Because those arethe other issues that I have been dealing with, and I know the livercan wreak havoc on your system if it is not functioning properly.I am trying to keep a very positive outlook, and trying to maintain asense of humor (because I don't know what I'd do without that), butboy I sure would love to know if anyone else has experienced any ofthe other weird symptoms I am concurrently experiencing.Thank you so much for taking the time to read my lengthy first post. With my gratitude, I look forward to your feedback.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Wow you and and are mirror images. Gallbladder sludge that caused my gastro to remove the gallbladder. No IBD or UC myself. Tons of issues with sleeping and this is coming from a gal that LOVED to sleep, can't fall asleep at night. I was diagnosed about two weeks ago, and I have been having trouble with a few things, sleeping, as I mentioned is one of them. Of course I can't turn my brain off, but that is too be expected I would suppose. In July I had an incident where i turned Jaundice, had a high fever and chills and plenty of pain, that was bad, but I am happy to say has not returned (yet?). I am also gaining weight, I am on a diet of sorts now to try to lose the weight, but everywhere i read, PSC causes weigh loss, although I am sure that is in the later stages. I have recently been put on 50,000 ius of Vitamin D once a week for a huge Vitamin

D definincy and I have had major anxiety, I have had to have my meds uped in the past month so that I can function without freaking out. My words seem to get jumbled in my head and come out of my mouth making little to no sense. I thought all of this was just because I am always different, can't have a single thing about me that is normal. Like you I try to keep a sense of humor, but what I have found out is that I have to mourn a little bit, or I lose it every now and then, and that is not fair to my family. We are diagnosed at a good time, if that is possible, but I mean medicine is changing a lot and I have hope for all of us. With that said, I also know how things can turn out, and I let the reality of each situation make an appearance in my life, but then turn back to the positive. As a matter of fact, this group is very positive, you can ask them

(us) anything and someone will have been there before...... Take care of yourself, I think at this point that is best we can do. you are in my thoughts and prayers. brandilregener wrote: Hi everyone,My name is , and I will be turning 44 in two weeks. This lastWednesday I received confirmation that I do, in fact, have PSC. InNovember of 1991, I ended up in the ER with my liver enzymes

goingthrough the roof, excruciating pain, and jaundice.I have had problems with cholangitis since 1991, but at the time, myhepatologist believed it was my Odie sphincter that was causing theproblems. In January 1992, I had an ERCP, which had to be abruptlyaborted due to an immediate onsent of pancreatitis (which landed me inthe hospital for 10 days). So they never were really able to confirmwhich duct was the problem. I have several gastros that wanted totake out my gallbladder, which over the years has been perfectlyhealthy (and I still have it), but they found through so much testingthat I made huge cholesterol crystals. I have undergone so many testsregarding my gallbladder, and liver ultrasounds, continuous monitoringof my blood, etc. And because I was asymptomatic for so long, Ithought I was fine.... But now I see I was ignorant of what liverdisease is all about.Around 7 years ago, I began having

terrible right flank pain, RQP, andterrible stomach pain. Since it came and went (sometimes lasting 1/2hour and other times lasting hours), I didn't do anything about it. Ijust thought it was sludge, and I would get over it. When I couldn't take it anymore, I went back to my hep at UCLA(wonderful guy - he refused to let any gastros take my gallbladder orhave any other unnecessary procedures). He ordered an MRCP for me,which provided a definite diagnosis of PSC. I am now undergoing therest of the testing, which I am sure is all too familiar to the restof you.What causes me to think that I may be an atypical presentation is thatI don't have any UC/IBD type disorders. Actually, I have been gainingweight (which is really bad). I am extremely fatigued, I have an extreme Vitamin D deficiency,issues with my stool, and terrible GERD, which I know are all part ofthis disease.So now the questions... Have

any of you experienced changes in yourwrist bones, shortness of breath, the atypical weight gain,panic/anxiety attacks, word salad, and insomnia? Because those arethe other issues that I have been dealing with, and I know the livercan wreak havoc on your system if it is not functioning properly.I am trying to keep a very positive outlook, and trying to maintain asense of humor (because I don't know what I'd do without that), butboy I sure would love to know if anyone else has experienced any ofthe other weird symptoms I am concurrently experiencing.Thank you so much for taking the time to read my lengthy first post. With my gratitude, I look forward to your feedback.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Hi ,

Thank you so much for your response. I read your blog, and WOW. I am

so thrilled for your brother.

And most of all, thank you for your support!

>

> -

>

> I am sorry to hear of your dx, but glad you found this group.

>

> All your symptoms are right there in line with what my brother faced

with

> PSC, only he does have UC. I am happy to report that he is 3 month post

> transplant and is doing fantastic. I would welcome you to read the

blog I

> kept of his ordeal if you like, it goes back to Nov. 2006 I believe.

But

> you can visit it at www.savedusty.blogspot.com. The updates are few

and far

> between-but that is because he is doing so well.

>

> But before this, like so many others, he was on a roller coaster.

But do

> keep in mind, others (that I am sure to pop out in time) have lived many

> many years with only occasional issues with PSC. The best thing you

can do

> is ask lots of questions. Don't be afraid to ask them, this group

is a vast

> pool of unconditional support & knowledge.

>

> Welcome!

>

> in Texas

> Brother, , UC & PSC, liver transplant 12-12-07

>

>

[Guest guest]

Hi ,

Thank you so much for your response. I read your blog, and WOW. I am

so thrilled for your brother.

And most of all, thank you for your support!

>

> -

>

> I am sorry to hear of your dx, but glad you found this group.

>

> All your symptoms are right there in line with what my brother faced

with

> PSC, only he does have UC. I am happy to report that he is 3 month post

> transplant and is doing fantastic. I would welcome you to read the

blog I

> kept of his ordeal if you like, it goes back to Nov. 2006 I believe.

But

> you can visit it at www.savedusty.blogspot.com. The updates are few

and far

> between-but that is because he is doing so well.

>

> But before this, like so many others, he was on a roller coaster.

But do

> keep in mind, others (that I am sure to pop out in time) have lived many

> many years with only occasional issues with PSC. The best thing you

can do

> is ask lots of questions. Don't be afraid to ask them, this group

is a vast

> pool of unconditional support & knowledge.

>

> Welcome!

>

> in Texas

> Brother, , UC & PSC, liver transplant 12-12-07

>

>

[Guest guest]

Hi ,

It is hard to believe that someone else is having the same weird

symptoms I have been having. I somehow feel less alone now, but

please know my heart goes out to you.

My Vitamin D deficiency was discovered two years ago, and the endo did

nothing about it. Then I had a different doc run tests and he about

flipped that my levels were soooo low. I was megadosed

(100,000iu/week for 8 weeks), and nothing. Then I went to a Vitamin

expert at UCLA who megadosed me again for two months, and nothing.

Then out of frustration (hers not mine), she tried to megadose me

again, only this time for 6 months. I had to stop after 7 weeks

because I had become so ill from all of the Vitamin D.

My hepatologist told me it takes a while for the levels to come up,

but megadosing isn't the answer. I wish I would have asked him first.

I truly feel for you with the inverted sleep pattern, and I know how

you feel with the racing mind. I am so glad I found this group. I am

so sorry that you are experiencing what I am, I wish I had a magic wand.

I will keep you in my thoughts and prayers.

>

> Wow you and and are mirror images. Gallbladder sludge that

caused my gastro to remove the gallbladder. No IBD or UC myself.

Tons of issues with sleeping and this is coming from a gal that LOVED

to sleep, can't fall asleep at night. I was diagnosed about two weeks

ago, and I have been having trouble with a few things, sleeping, as I

mentioned is one of them. Of course I can't turn my brain off, but

that is too be expected I would suppose.

>

> In July I had an incident where i turned Jaundice, had a high

fever and chills and plenty of pain, that was bad, but I am happy to

say has not returned (yet?).

>

> I am also gaining weight, I am on a diet of sorts now to try to

lose the weight, but everywhere i read, PSC causes weigh loss,

although I am sure that is in the later stages. I have recently been

put on 50,000 ius of Vitamin D once a week for a huge Vitamin D

definincy and I have had major anxiety, I have had to have my meds

uped in the past month so that I can function without freaking out. My

words seem to get jumbled in my head and come out of my mouth making

little to no sense. I thought all of this was just because I am

always different, can't have a single thing about me that is normal.

>

> Like you I try to keep a sense of humor, but what I have found out

is that I have to mourn a little bit, or I lose it every now and then,

and that is not fair to my family.

>

> We are diagnosed at a good time, if that is possible, but I mean

medicine is changing a lot and I have hope for all of us. With that

said, I also know how things can turn out, and I let the reality of

each situation make an appearance in my life, but then turn back to

the positive. As a matter of fact, this group is very positive, you

can ask them (us) anything and someone will have been there before......

>

> Take care of yourself, I think at this point that is best we can do.

>

> you are in my thoughts and prayers.

>

> brandi

>

[Guest guest]

Hi ,

It is hard to believe that someone else is having the same weird

symptoms I have been having. I somehow feel less alone now, but

please know my heart goes out to you.

My Vitamin D deficiency was discovered two years ago, and the endo did

nothing about it. Then I had a different doc run tests and he about

flipped that my levels were soooo low. I was megadosed

(100,000iu/week for 8 weeks), and nothing. Then I went to a Vitamin

expert at UCLA who megadosed me again for two months, and nothing.

Then out of frustration (hers not mine), she tried to megadose me

again, only this time for 6 months. I had to stop after 7 weeks

because I had become so ill from all of the Vitamin D.

My hepatologist told me it takes a while for the levels to come up,

but megadosing isn't the answer. I wish I would have asked him first.

I truly feel for you with the inverted sleep pattern, and I know how

you feel with the racing mind. I am so glad I found this group. I am

so sorry that you are experiencing what I am, I wish I had a magic wand.

I will keep you in my thoughts and prayers.

>

> Wow you and and are mirror images. Gallbladder sludge that

caused my gastro to remove the gallbladder. No IBD or UC myself.

Tons of issues with sleeping and this is coming from a gal that LOVED

to sleep, can't fall asleep at night. I was diagnosed about two weeks

ago, and I have been having trouble with a few things, sleeping, as I

mentioned is one of them. Of course I can't turn my brain off, but

that is too be expected I would suppose.

>

> In July I had an incident where i turned Jaundice, had a high

fever and chills and plenty of pain, that was bad, but I am happy to

say has not returned (yet?).

>

> I am also gaining weight, I am on a diet of sorts now to try to

lose the weight, but everywhere i read, PSC causes weigh loss,

although I am sure that is in the later stages. I have recently been

put on 50,000 ius of Vitamin D once a week for a huge Vitamin D

definincy and I have had major anxiety, I have had to have my meds

uped in the past month so that I can function without freaking out. My

words seem to get jumbled in my head and come out of my mouth making

little to no sense. I thought all of this was just because I am

always different, can't have a single thing about me that is normal.

>

> Like you I try to keep a sense of humor, but what I have found out

is that I have to mourn a little bit, or I lose it every now and then,

and that is not fair to my family.

>

> We are diagnosed at a good time, if that is possible, but I mean

medicine is changing a lot and I have hope for all of us. With that

said, I also know how things can turn out, and I let the reality of

each situation make an appearance in my life, but then turn back to

the positive. As a matter of fact, this group is very positive, you

can ask them (us) anything and someone will have been there before......

>

> Take care of yourself, I think at this point that is best we can do.

>

> you are in my thoughts and prayers.

>

> brandi

>

[Guest guest]

Welcome !!!

You said, " Have any of you experienced changes in your

wrist bones, shortness of breath, the atypical weight gain,

panic/anxiety attacks, word salad, and insomnia? "

Well....yes, sometimes, definately, yes, yes, and sometimes.

My most concerning issue is the weight gain. I am eating 1600-1800

calories a day and breastfeeding twins and I'm still gaining

weight. I have a lot of pain issues to and am gathering all my

records and going to a naturopathic doctor since my other doctors

seem to think I'm a hog, sitting at home eating bon bons all day.

The other things I suffer from as well. My joints have a lot of

pain and sometimes swell and right now I have a weird lump on my

left wrist, right where it bends. Word salad is a good

description. It is so aggrevating.

Well, sorry you had to join us but welcome!

, 24, from Nebraska

PSC '07

PBC '06

[Guest guest]

Welcome !!!

You said, " Have any of you experienced changes in your

wrist bones, shortness of breath, the atypical weight gain,

panic/anxiety attacks, word salad, and insomnia? "

Well....yes, sometimes, definately, yes, yes, and sometimes.

My most concerning issue is the weight gain. I am eating 1600-1800

calories a day and breastfeeding twins and I'm still gaining

weight. I have a lot of pain issues to and am gathering all my

records and going to a naturopathic doctor since my other doctors

seem to think I'm a hog, sitting at home eating bon bons all day.

The other things I suffer from as well. My joints have a lot of

pain and sometimes swell and right now I have a weird lump on my

left wrist, right where it bends. Word salad is a good

description. It is so aggrevating.

Well, sorry you had to join us but welcome!

, 24, from Nebraska

PSC '07

PBC '06

[Guest guest]

Hi ;

Welcome to the group!

If the unusual weight gain is around your abdomen, then I'm afraid

that this could be ascites ... accumulation of protein-containing

(ascitic) fluid in the abdominal cavity:

http://www.merck.com/mmhe/sec10/ch135/ch135e.html

If the build up of fluid around the liver causes pressure on your

lungs, then this could lead to shortness of breath.

Often accompanying ascites is hepatic encephalopathy:

http://www.emedicine.com/med/topic3185.htm

which is the result of accumulation of neurotoxic substances, such as

ammonia in the blood, and this could be responsible for your

insomnia, " word salad " , and anxiety/panic attacks.

There are some medications and diets that could help reduce ammonia

levels and fluid build up, and so it would be worth talking with your

doctor about this as a possible explanation for some of your symptoms!

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)

[Guest guest]

:

You sound alot like me....I was diagnosed with colitis when I was 15

years old by a small town Doc....well as I got older I went to gastro

docs and they said I could not have ever had colitis as my colon was

pink and healthy.....I have a colon scope every 5 years and hear the

same thing.....have been bothered with IBS for years tho but that

stopped about 5-10 years ago....in fact I can't even remember my last

IBS attack....I have my doctor stumped right now.....as I am 59 and

was diagnosed with PSC 2 weeks ago---my doctor can't understand my

age, I am female and no colitis or chrons....I have had problems with

loose stools not since I've been on Urso tho.....tired all the time

but when it is night my eyes pop open and my mind turns on....Know

just what you mean about that.....I have not lost weight either in

fact I put on 15 lbs then lost 5 but stay at 10 lbs up....I was told

last summer that my bone density in my spine were awful....-4.1 my

wrist and something else were bad too but not as bad as my spine and

they thought that was strange....in fact I went to a bone doctor as I

fell off my bike and tore my rotator cuff an he said he did not

believe my spine bone density test as it was soooo bad and I did not

appear to be that bad.....(both Mom and Dad have ostoprossis tho) I

have had 2 bad attacks of pain in my chest and RQ...that is how they

found PSC....I had a biopsy on Wed but no results yet....they have

told me they are almost possitive there is no cancer but final

comformation will be with this biopsy....the biopsy was maily to see

what stage I am at.....now I broke out in a very strange rash all

over my trunk.....my neighbor came in as I was on the phone with the

doctors office yesterday and my neighbor is a nurse so I gave her the

phone and the two nurses were discussing my rash...they put me on

benadryl now and today the rash is lighter in color but now I am even

more tired.....this is getting to be a real pain in the butt.......no

energy to do anything..I love to quilt and have not even done much of

that.....

Hope all goes well for you,

CJ

In , Hanley

wrote:﷯﷯

>﷯﷯

> Wow you and and are mirror images.  Gallbladder sludge that

caused my gastro to remove the gallbladder.  No IBD or UC myself. 

Tons of issues with sleeping and this is coming from a gal that LOVED

to sleep, can't fall asleep at night.  I was diagnosed about two

weeks ago, and I have been having trouble with a few things,

sleeping, as I mentioned is one of them.  Of course I can't turn my

brain off, but that is too be expected I would suppose.﷯﷯

>    ﷯﷯

>   In July I had an incident where i turned Jaundice, had a high

fever and chills and plenty of pain, that was bad, but I am happy to

say has not returned (yet?).﷯﷯

>    ﷯﷯

>   I am also gaining weight, I am on a diet of sorts now to try to

lose the weight, but everywhere i read, PSC causes weigh loss,

although I am sure that is in the later stages.  I have recently been

put on 50,000 ius of Vitamin D once a week for a huge Vitamin D

definincy and I have had major anxiety, I have had to have my meds

uped in the past month so that I can function without freaking out.

My words seem to get jumbled in my head and come out of my mouth

making little to no sense.  I thought all of this was just because I

am always different, can't have a single thing about me that is

normal.  ﷯﷯

>    ﷯﷯

>   Like you I try to keep a sense of humor, but what I have found

out is that I have to mourn a little bit, or I lose it every now and

then, and that is not fair to my family.﷯﷯

>    ﷯﷯

>   We are diagnosed at a good time, if that is possible, but I mean

medicine is changing a lot and I have hope for all of us.  With that

said, I also know how things can turn out, and I let the reality of

each situation make an appearance in my life, but then turn back to

the positive.  As a matter of fact, this group is very positive, you

can ask them (us) anything and someone will have been there

before......﷯﷯

>    ﷯﷯

>   Take care of yourself, I think at this point that is best we can

do.﷯﷯

>    ﷯﷯

>   you are in my thoughts and prayers.﷯﷯

>    ﷯﷯

>   brandi﷯﷯

> ﷯﷯

> lregener wrote:﷯﷯

>           Hi everyone,﷯﷯

> ﷯﷯

> My name is , and I will be turning 44 in two weeks. This

last﷯﷯

> Wednesday I received confirmation that I do, in fact, have PSC.

In﷯﷯

> November of 1991, I ended up in the ER with my liver enzymes

going﷯﷯

> through the roof, excruciating pain, and jaundice.﷯﷯

> ﷯﷯

> I have had problems with cholangitis since 1991, but at the time,

my﷯﷯

> hepatologist believed it was my Odie sphincter that was causing

the﷯﷯

> problems. In January 1992, I had an ERCP, which had to be

abruptly﷯﷯

> aborted due to an immediate onsent of pancreatitis (which landed me

in﷯﷯

> the hospital for 10 days). So they never were really able to

confirm﷯﷯

> which duct was the problem. I have several gastros that wanted

to﷯﷯

> take out my gallbladder, which over the years has been

perfectly﷯﷯

> healthy (and I still have it), but they found through so much

testing﷯﷯

> that I made huge cholesterol crystals. I have undergone so many

tests﷯﷯

> regarding my gallbladder, and liver ultrasounds, continuous

monitoring﷯﷯

> of my blood, etc. And because I was asymptomatic for so long,

I﷯﷯

> thought I was fine.... But now I see I was ignorant of what

liver﷯﷯

> disease is all about.﷯﷯

> ﷯﷯

> Around 7 years ago, I began having terrible right flank pain, RQP,

and﷯﷯

> terrible stomach pain. Since it came and went (sometimes lasting

1/2﷯﷯

> hour and other times lasting hours), I didn't do anything about it.

I﷯﷯

> just thought it was sludge, and I would get over it. ﷯﷯

> ﷯﷯

> When I couldn't take it anymore, I went back to my hep at UCLA﷯﷯

> (wonderful guy - he refused to let any gastros take my gallbladder

or﷯﷯

> have any other unnecessary procedures). He ordered an MRCP for

me,﷯﷯

> which provided a definite diagnosis of PSC. I am now undergoing

the﷯﷯

> rest of the testing, which I am sure is all too familiar to the

rest﷯﷯

> of you.﷯﷯

> ﷯﷯

> What causes me to think that I may be an atypical presentation is

that﷯﷯

> I don't have any UC/IBD type disorders. Actually, I have been

gaining﷯﷯

> weight (which is really bad). ﷯﷯

> ﷯﷯

> I am extremely fatigued, I have an extreme Vitamin D

deficiency,﷯﷯

> issues with my stool, and terrible GERD, which I know are all part

of﷯﷯

> this disease.﷯﷯

> ﷯﷯

> So now the questions... Have any of you experienced changes in

your﷯﷯

> wrist bones, shortness of breath, the atypical weight gain,﷯﷯

> panic/anxiety attacks, word salad, and insomnia? Because those

are﷯﷯

> the other issues that I have been dealing with, and I know the

liver﷯﷯

> can wreak havoc on your system if it is not functioning

properly.﷯﷯

> ﷯﷯

> I am trying to keep a very positive outlook, and trying to maintain

a﷯﷯

> sense of humor (because I don't know what I'd do without that),

but﷯﷯

> boy I sure would love to know if anyone else has experienced any

of﷯﷯

> the other weird symptoms I am concurrently experiencing.﷯﷯

> ﷯﷯

> Thank you so much for taking the time to read my lengthy first

post. ﷯﷯

> With my gratitude, I look forward to your feedback.﷯﷯

> ﷯﷯

> ﷯﷯

> ﷯﷯

> ﷯﷯

> ﷯﷯

>                            ﷯﷯

> ﷯﷯

>        ﷯﷯

> ---------------------------------﷯﷯

> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. 

Try it now.﷯﷯

>﷯﷯

[Guest guest]

:

You sound alot like me....I was diagnosed with colitis when I was 15

years old by a small town Doc....well as I got older I went to gastro

docs and they said I could not have ever had colitis as my colon was

pink and healthy.....I have a colon scope every 5 years and hear the

same thing.....have been bothered with IBS for years tho but that

stopped about 5-10 years ago....in fact I can't even remember my last

IBS attack....I have my doctor stumped right now.....as I am 59 and

was diagnosed with PSC 2 weeks ago---my doctor can't understand my

age, I am female and no colitis or chrons....I have had problems with

loose stools not since I've been on Urso tho.....tired all the time

but when it is night my eyes pop open and my mind turns on....Know

just what you mean about that.....I have not lost weight either in

fact I put on 15 lbs then lost 5 but stay at 10 lbs up....I was told

last summer that my bone density in my spine were awful....-4.1 my

wrist and something else were bad too but not as bad as my spine and

they thought that was strange....in fact I went to a bone doctor as I

fell off my bike and tore my rotator cuff an he said he did not

believe my spine bone density test as it was soooo bad and I did not

appear to be that bad.....(both Mom and Dad have ostoprossis tho) I

have had 2 bad attacks of pain in my chest and RQ...that is how they

found PSC....I had a biopsy on Wed but no results yet....they have

told me they are almost possitive there is no cancer but final

comformation will be with this biopsy....the biopsy was maily to see

what stage I am at.....now I broke out in a very strange rash all

over my trunk.....my neighbor came in as I was on the phone with the

doctors office yesterday and my neighbor is a nurse so I gave her the

phone and the two nurses were discussing my rash...they put me on

benadryl now and today the rash is lighter in color but now I am even

more tired.....this is getting to be a real pain in the butt.......no

energy to do anything..I love to quilt and have not even done much of

that.....

Hope all goes well for you,

CJ

In , Hanley

wrote:﷯﷯

>﷯﷯

> Wow you and and are mirror images.  Gallbladder sludge that

caused my gastro to remove the gallbladder.  No IBD or UC myself. 

Tons of issues with sleeping and this is coming from a gal that LOVED

to sleep, can't fall asleep at night.  I was diagnosed about two

weeks ago, and I have been having trouble with a few things,

sleeping, as I mentioned is one of them.  Of course I can't turn my

brain off, but that is too be expected I would suppose.﷯﷯

>    ﷯﷯

>   In July I had an incident where i turned Jaundice, had a high

fever and chills and plenty of pain, that was bad, but I am happy to

say has not returned (yet?).﷯﷯

>    ﷯﷯

>   I am also gaining weight, I am on a diet of sorts now to try to

lose the weight, but everywhere i read, PSC causes weigh loss,

although I am sure that is in the later stages.  I have recently been

put on 50,000 ius of Vitamin D once a week for a huge Vitamin D

definincy and I have had major anxiety, I have had to have my meds

uped in the past month so that I can function without freaking out.

My words seem to get jumbled in my head and come out of my mouth

making little to no sense.  I thought all of this was just because I

am always different, can't have a single thing about me that is

normal.  ﷯﷯

>    ﷯﷯

>   Like you I try to keep a sense of humor, but what I have found

out is that I have to mourn a little bit, or I lose it every now and

then, and that is not fair to my family.﷯﷯

>    ﷯﷯

>   We are diagnosed at a good time, if that is possible, but I mean

medicine is changing a lot and I have hope for all of us.  With that

said, I also know how things can turn out, and I let the reality of

each situation make an appearance in my life, but then turn back to

the positive.  As a matter of fact, this group is very positive, you

can ask them (us) anything and someone will have been there

before......﷯﷯

>    ﷯﷯

>   Take care of yourself, I think at this point that is best we can

do.﷯﷯

>    ﷯﷯

>   you are in my thoughts and prayers.﷯﷯

>    ﷯﷯

>   brandi﷯﷯

> ﷯﷯

> lregener wrote:﷯﷯

>           Hi everyone,﷯﷯

> ﷯﷯

> My name is , and I will be turning 44 in two weeks. This

last﷯﷯

> Wednesday I received confirmation that I do, in fact, have PSC.

In﷯﷯

> November of 1991, I ended up in the ER with my liver enzymes

going﷯﷯

> through the roof, excruciating pain, and jaundice.﷯﷯

> ﷯﷯

> I have had problems with cholangitis since 1991, but at the time,

my﷯﷯

> hepatologist believed it was my Odie sphincter that was causing

the﷯﷯

> problems. In January 1992, I had an ERCP, which had to be

abruptly﷯﷯

> aborted due to an immediate onsent of pancreatitis (which landed me

in﷯﷯

> the hospital for 10 days). So they never were really able to

confirm﷯﷯

> which duct was the problem. I have several gastros that wanted

to﷯﷯

> take out my gallbladder, which over the years has been

perfectly﷯﷯

> healthy (and I still have it), but they found through so much

testing﷯﷯

> that I made huge cholesterol crystals. I have undergone so many

tests﷯﷯

> regarding my gallbladder, and liver ultrasounds, continuous

monitoring﷯﷯

> of my blood, etc. And because I was asymptomatic for so long,

I﷯﷯

> thought I was fine.... But now I see I was ignorant of what

liver﷯﷯

> disease is all about.﷯﷯

> ﷯﷯

> Around 7 years ago, I began having terrible right flank pain, RQP,

and﷯﷯

> terrible stomach pain. Since it came and went (sometimes lasting

1/2﷯﷯

> hour and other times lasting hours), I didn't do anything about it.

I﷯﷯

> just thought it was sludge, and I would get over it. ﷯﷯

> ﷯﷯

> When I couldn't take it anymore, I went back to my hep at UCLA﷯﷯

> (wonderful guy - he refused to let any gastros take my gallbladder

or﷯﷯

> have any other unnecessary procedures). He ordered an MRCP for

me,﷯﷯

> which provided a definite diagnosis of PSC. I am now undergoing

the﷯﷯

> rest of the testing, which I am sure is all too familiar to the

rest﷯﷯

> of you.﷯﷯

> ﷯﷯

> What causes me to think that I may be an atypical presentation is

that﷯﷯

> I don't have any UC/IBD type disorders. Actually, I have been

gaining﷯﷯

> weight (which is really bad). ﷯﷯

> ﷯﷯

> I am extremely fatigued, I have an extreme Vitamin D

deficiency,﷯﷯

> issues with my stool, and terrible GERD, which I know are all part

of﷯﷯

> this disease.﷯﷯

> ﷯﷯

> So now the questions... Have any of you experienced changes in

your﷯﷯

> wrist bones, shortness of breath, the atypical weight gain,﷯﷯

> panic/anxiety attacks, word salad, and insomnia? Because those

are﷯﷯

> the other issues that I have been dealing with, and I know the

liver﷯﷯

> can wreak havoc on your system if it is not functioning

properly.﷯﷯

> ﷯﷯

> I am trying to keep a very positive outlook, and trying to maintain

a﷯﷯

> sense of humor (because I don't know what I'd do without that),

but﷯﷯

> boy I sure would love to know if anyone else has experienced any

of﷯﷯

> the other weird symptoms I am concurrently experiencing.﷯﷯

> ﷯﷯

> Thank you so much for taking the time to read my lengthy first

post. ﷯﷯

> With my gratitude, I look forward to your feedback.﷯﷯

> ﷯﷯

> ﷯﷯

> ﷯﷯

> ﷯﷯

> ﷯﷯

>                            ﷯﷯

> ﷯﷯

>        ﷯﷯

> ---------------------------------﷯﷯

> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. 

Try it now.﷯﷯

>﷯﷯

[Guest guest]

Please

remember to delete all but a few sentences of the e-mail you are reply to. Don’t worry you’ll get the hang of

it in no time. J Welcome to the group.

Thank you very much,

Barb in Texas - Together in the Fight, Whatever it

Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in

Dallas

-----Original Message-----

From: [mailto: ] On Behalf Of cjlackie

[Guest guest]

Please

remember to delete all but a few sentences of the e-mail you are reply to. Don’t worry you’ll get the hang of

it in no time. J Welcome to the group.

Thank you very much,

Barb in Texas - Together in the Fight, Whatever it

Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in

Dallas

-----Original Message-----

From: [mailto: ] On Behalf Of cjlackie

[Guest guest]

,

Where are you located? I'm in Los Alamitos and went to UCLA to get my transplant 3 years ago. Who is your Hep. Mine is Dr. Han. Nice guy.

Pat

Subject: Just diagnosed, my story, and questionsTo: Date: Friday, March 14, 2008, 11:16 AM

Hi everyone,My name is , and I will be turning 44 in two weeks. This lastWednesday I received confirmation that I do, in fact, have PSC. InNovember of 1991, I ended up in the ER with my liver enzymes goingthrough the roof, excruciating pain, and jaundice.I have had problems with cholangitis since 1991, but at the time, myhepatologist believed it was my Odie sphincter that was causing theproblems. In January 1992, I had an ERCP, which had to be abruptlyaborted due to an immediate onsent of pancreatitis (which landed me inthe hospital for 10 days). So they never were really able to confirmwhich duct was the problem. I have several gastros that wanted totake out my gallbladder, which over the years has been perfectlyhealthy (and I still have it), but they found through so much testingthat I made huge cholesterol crystals. I have undergone so many testsregarding my gallbladder, and

liver ultrasounds, continuous monitoringof my blood, etc. And because I was asymptomatic for so long, Ithought I was fine.... But now I see I was ignorant of what liverdisease is all about.Around 7 years ago, I began having terrible right flank pain, RQP, andterrible stomach pain. Since it came and went (sometimes lasting 1/2hour and other times lasting hours), I didn't do anything about it. Ijust thought it was sludge, and I would get over it. When I couldn't take it anymore, I went back to my hep at UCLA(wonderful guy - he refused to let any gastros take my gallbladder orhave any other unnecessary procedures). He ordered an MRCP for me,which provided a definite diagnosis of PSC. I am now undergoing therest of the testing, which I am sure is all too familiar to the restof you.What causes me to think that I may be an atypical presentation is thatI don't have any UC/IBD type

disorders. Actually, I have been gainingweight (which is really bad). I am extremely fatigued, I have an extreme Vitamin D deficiency,issues with my stool, and terrible GERD, which I know are all part ofthis disease.So now the questions... Have any of you experienced changes in yourwrist bones, shortness of breath, the atypical weight gain,panic/anxiety attacks, word salad, and insomnia? Because those arethe other issues that I have been dealing with, and I know the livercan wreak havoc on your system if it is not functioning properly.I am trying to keep a very positive outlook, and trying to maintain asense of humor (because I don't know what I'd do without that), butboy I sure would love to know if anyone else has experienced any ofthe other weird symptoms I am concurrently experiencing.Thank you so much for taking the time to read my lengthy first post. With my gratitude, I

look forward to your feedback.

[Guest guest]

Hi ,I have UC/J-pouch, PSC, AIH (autoimmune hepatitis) & adrenal gland insufficiency. Here are some of my symptoms:Medical History

Fatigue

Often

need to lay down at work (0-3 times per day)

Struggle

every day to do standard things when I wake up: take medication,

feed cats, make coffee or tea, prepare breakfast, shower, wash hair,

brush teeth. Days I go to work I feel I can do this knowing I have

the next day to rest.

Need 0 -

3 naps per day

Wake up

2-5 times per night to use bathroom

When I

have pouchitis, I have stool leaks, once or twice a night

Explosive

diarrhea & gas

Watery

stools

Butt burn

(burning of the anus)

Itching

Nausea

Vomiting

in my throat

Occasional

pain in legs requiring pain medication

Occasional

pain in right upper quadrant

Occasional

chills

There are a number of people here who don't have UC or an IBD. Sometimes this presents itself after the PSC diagnosis (usually through a colonoscopy and biopsies). I think we all have some strange symptoms. So don't feel alone if you have unusual symptoms. However, don't rule out that you have something other than PSC going on, and that needs to be treated. Since you're at UCLA, I think you're in good hands. They will hopefully find out what is going on.

Marie

To: From: pej_jones@...Date: Sat, 20 Sep 2008 19:19:27 -0700Subject: Re: Just diagnosed, my story, and questions

,

Where are you located? I'm in Los Alamitos and went to UCLA to get my transplant 3 years ago. Who is your Hep. Mine is Dr. Han. Nice guy.

Pat

From: lregener <lregener (AT) yahoo (DOT) com>Subject: Just diagnosed, my story, and questionsTo: Date: Friday, March 14, 2008, 11:16 AM

Hi everyone,My name is , and I will be turning 44 in two weeks. This lastWednesday I received confirmation that I do, in fact, have PSC. InNovember of 1991, I ended up in the ER with my liver enzymes goingthrough the roof, excruciating pain, and jaundice.I have had problems with cholangitis since 1991, but at the time, myhepatologist believed it was my Odie sphincter that was causing theproblems. In January 1992, I had an ERCP, which had to be abruptlyaborted due to an immediate onsent of pancreatitis (which landed me inthe hospital for 10 days). So they never were really able to confirmwhich duct was the problem. I have several gastros that wanted totake out my gallbladder, which over the years has been perfectlyhealthy (and I still have it), but they found through so much testingthat I made huge cholesterol crystals. I have undergone so many testsregarding my gallbladder, and

liver ultrasounds, continuous monitoringof my blood, etc. And because I was asymptomatic for so long, Ithought I was fine.... But now I see I was ignorant of what liverdisease is all about.Around 7 years ago, I began having terrible right flank pain, RQP, andterrible stomach pain. Since it came and went (sometimes lasting 1/2hour and other times lasting hours), I didn't do anything about it. Ijust thought it was sludge, and I would get over it. When I couldn't take it anymore, I went back to my hep at UCLA(wonderful guy - he refused to let any gastros take my gallbladder orhave any other unnecessary procedures). He ordered an MRCP for me,which provided a definite diagnosis of PSC. I am now undergoing therest of the testing, which I am sure is all too familiar to the restof you.What causes me to think that I may be an atypical presentation is thatI don't have any UC/IBD type

disorders. Actually, I have been gainingweight (which is really bad). I am extremely fatigued, I have an extreme Vitamin D deficiency,issues with my stool, and terrible GERD, which I know are all part ofthis disease.So now the questions... Have any of you experienced changes in yourwrist bones, shortness of breath, the atypical weight gain,panic/anxiety attacks, word salad, and insomnia? Because those arethe other issues that I have been dealing with, and I know the livercan wreak havoc on your system if it is not functioning properly.I am trying to keep a very positive outlook, and trying to maintain asense of humor (because I don't know what I'd do without that), butboy I sure would love to know if anyone else has experienced any ofthe other weird symptoms I am concurrently experiencing.Thank you so much for taking the time to read my lengthy first post. With my gratitude, I

look forward to your feedback.

See how Windows connects the people, information, and fun that are part of your life. See Now

[Guest guest]

Hi ,I have UC/J-pouch, PSC, AIH (autoimmune hepatitis) & adrenal gland insufficiency. Here are some of my symptoms:Medical History

Fatigue

Often

need to lay down at work (0-3 times per day)

Struggle

every day to do standard things when I wake up: take medication,

feed cats, make coffee or tea, prepare breakfast, shower, wash hair,

brush teeth. Days I go to work I feel I can do this knowing I have

the next day to rest.

Need 0 -

3 naps per day

Wake up

2-5 times per night to use bathroom

When I

have pouchitis, I have stool leaks, once or twice a night

Explosive

diarrhea & gas

Watery

stools

Butt burn

(burning of the anus)

Itching

Nausea

Vomiting

in my throat

Occasional

pain in legs requiring pain medication

Occasional

pain in right upper quadrant

Occasional

chills

There are a number of people here who don't have UC or an IBD. Sometimes this presents itself after the PSC diagnosis (usually through a colonoscopy and biopsies). I think we all have some strange symptoms. So don't feel alone if you have unusual symptoms. However, don't rule out that you have something other than PSC going on, and that needs to be treated. Since you're at UCLA, I think you're in good hands. They will hopefully find out what is going on.

Marie

To: From: pej_jones@...Date: Sat, 20 Sep 2008 19:19:27 -0700Subject: Re: Just diagnosed, my story, and questions

,

Where are you located? I'm in Los Alamitos and went to UCLA to get my transplant 3 years ago. Who is your Hep. Mine is Dr. Han. Nice guy.

Pat

From: lregener <lregener (AT) yahoo (DOT) com>Subject: Just diagnosed, my story, and questionsTo: Date: Friday, March 14, 2008, 11:16 AM

Hi everyone,My name is , and I will be turning 44 in two weeks. This lastWednesday I received confirmation that I do, in fact, have PSC. InNovember of 1991, I ended up in the ER with my liver enzymes goingthrough the roof, excruciating pain, and jaundice.I have had problems with cholangitis since 1991, but at the time, myhepatologist believed it was my Odie sphincter that was causing theproblems. In January 1992, I had an ERCP, which had to be abruptlyaborted due to an immediate onsent of pancreatitis (which landed me inthe hospital for 10 days). So they never were really able to confirmwhich duct was the problem. I have several gastros that wanted totake out my gallbladder, which over the years has been perfectlyhealthy (and I still have it), but they found through so much testingthat I made huge cholesterol crystals. I have undergone so many testsregarding my gallbladder, and

liver ultrasounds, continuous monitoringof my blood, etc. And because I was asymptomatic for so long, Ithought I was fine.... But now I see I was ignorant of what liverdisease is all about.Around 7 years ago, I began having terrible right flank pain, RQP, andterrible stomach pain. Since it came and went (sometimes lasting 1/2hour and other times lasting hours), I didn't do anything about it. Ijust thought it was sludge, and I would get over it. When I couldn't take it anymore, I went back to my hep at UCLA(wonderful guy - he refused to let any gastros take my gallbladder orhave any other unnecessary procedures). He ordered an MRCP for me,which provided a definite diagnosis of PSC. I am now undergoing therest of the testing, which I am sure is all too familiar to the restof you.What causes me to think that I may be an atypical presentation is thatI don't have any UC/IBD type

disorders. Actually, I have been gainingweight (which is really bad). I am extremely fatigued, I have an extreme Vitamin D deficiency,issues with my stool, and terrible GERD, which I know are all part ofthis disease.So now the questions... Have any of you experienced changes in yourwrist bones, shortness of breath, the atypical weight gain,panic/anxiety attacks, word salad, and insomnia? Because those arethe other issues that I have been dealing with, and I know the livercan wreak havoc on your system if it is not functioning properly.I am trying to keep a very positive outlook, and trying to maintain asense of humor (because I don't know what I'd do without that), butboy I sure would love to know if anyone else has experienced any ofthe other weird symptoms I am concurrently experiencing.Thank you so much for taking the time to read my lengthy first post. With my gratitude, I

look forward to your feedback.

See how Windows connects the people, information, and fun that are part of your life. See Now

[Guest guest]

Hi ,I have UC/J-pouch, PSC, AIH (autoimmune hepatitis) & adrenal gland insufficiency. Here are some of my symptoms:Medical History

Fatigue

Often

need to lay down at work (0-3 times per day)

Struggle

every day to do standard things when I wake up: take medication,

feed cats, make coffee or tea, prepare breakfast, shower, wash hair,

brush teeth. Days I go to work I feel I can do this knowing I have

the next day to rest.

Need 0 -

3 naps per day

Wake up

2-5 times per night to use bathroom

When I

have pouchitis, I have stool leaks, once or twice a night

Explosive

diarrhea & gas

Watery

stools

Butt burn

(burning of the anus)

Itching

Nausea

Vomiting

in my throat

Occasional

pain in legs requiring pain medication

Occasional

pain in right upper quadrant

Occasional

chills

There are a number of people here who don't have UC or an IBD. Sometimes this presents itself after the PSC diagnosis (usually through a colonoscopy and biopsies). I think we all have some strange symptoms. So don't feel alone if you have unusual symptoms. However, don't rule out that you have something other than PSC going on, and that needs to be treated. Since you're at UCLA, I think you're in good hands. They will hopefully find out what is going on.

Marie

To: From: pej_jones@...Date: Sat, 20 Sep 2008 19:19:27 -0700Subject: Re: Just diagnosed, my story, and questions

,

Where are you located? I'm in Los Alamitos and went to UCLA to get my transplant 3 years ago. Who is your Hep. Mine is Dr. Han. Nice guy.

Pat

From: lregener <lregener (AT) yahoo (DOT) com>Subject: Just diagnosed, my story, and questionsTo: Date: Friday, March 14, 2008, 11:16 AM

Hi everyone,My name is , and I will be turning 44 in two weeks. This lastWednesday I received confirmation that I do, in fact, have PSC. InNovember of 1991, I ended up in the ER with my liver enzymes goingthrough the roof, excruciating pain, and jaundice.I have had problems with cholangitis since 1991, but at the time, myhepatologist believed it was my Odie sphincter that was causing theproblems. In January 1992, I had an ERCP, which had to be abruptlyaborted due to an immediate onsent of pancreatitis (which landed me inthe hospital for 10 days). So they never were really able to confirmwhich duct was the problem. I have several gastros that wanted totake out my gallbladder, which over the years has been perfectlyhealthy (and I still have it), but they found through so much testingthat I made huge cholesterol crystals. I have undergone so many testsregarding my gallbladder, and

liver ultrasounds, continuous monitoringof my blood, etc. And because I was asymptomatic for so long, Ithought I was fine.... But now I see I was ignorant of what liverdisease is all about.Around 7 years ago, I began having terrible right flank pain, RQP, andterrible stomach pain. Since it came and went (sometimes lasting 1/2hour and other times lasting hours), I didn't do anything about it. Ijust thought it was sludge, and I would get over it. When I couldn't take it anymore, I went back to my hep at UCLA(wonderful guy - he refused to let any gastros take my gallbladder orhave any other unnecessary procedures). He ordered an MRCP for me,which provided a definite diagnosis of PSC. I am now undergoing therest of the testing, which I am sure is all too familiar to the restof you.What causes me to think that I may be an atypical presentation is thatI don't have any UC/IBD type

disorders. Actually, I have been gainingweight (which is really bad). I am extremely fatigued, I have an extreme Vitamin D deficiency,issues with my stool, and terrible GERD, which I know are all part ofthis disease.So now the questions... Have any of you experienced changes in yourwrist bones, shortness of breath, the atypical weight gain,panic/anxiety attacks, word salad, and insomnia? Because those arethe other issues that I have been dealing with, and I know the livercan wreak havoc on your system if it is not functioning properly.I am trying to keep a very positive outlook, and trying to maintain asense of humor (because I don't know what I'd do without that), butboy I sure would love to know if anyone else has experienced any ofthe other weird symptoms I am concurrently experiencing.Thank you so much for taking the time to read my lengthy first post. With my gratitude, I

look forward to your feedback.

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