New Member

[Guest guest]

--- I do know what you mean! I have enough mush to win the Ididorod

or whatever it is called when then sled dogs race. Welcome home.

In @y..., " suemarr1954 " wrote:

> Hi, everyone, I just joined the group today. My name is . I

> have had Fibromyalgia symptoms for about 16+ years. This past year

> seems to have been worse for some reason...or did I just forget the

> other years?!?!? ;-) Seems I have been in this " fibrofog " for

> weeks. My brain is like mush. I work full time and am able to get

> my job done, but by the end of the day, there is nothing left. I

> know you all know what I am talking about.

>

> Anyway, I just wanted to check in.

[Guest guest]

--- I do know what you mean! I have enough mush to win the Ididorod

or whatever it is called when then sled dogs race. Welcome home.

In @y..., " suemarr1954 " wrote:

> Hi, everyone, I just joined the group today. My name is . I

> have had Fibromyalgia symptoms for about 16+ years. This past year

> seems to have been worse for some reason...or did I just forget the

> other years?!?!? ;-) Seems I have been in this " fibrofog " for

> weeks. My brain is like mush. I work full time and am able to get

> my job done, but by the end of the day, there is nothing left. I

> know you all know what I am talking about.

>

> Anyway, I just wanted to check in.

[Guest guest]

Hi, My name is Enid Cresson. I was diagnosed in August, 2008 with

PSC. I have been ill with a low grade fever and extreme fatigue since

June, 2005. At the time I received my diagnosis, I was also diagnosed

with Graves disease. All the doctors I have seen have not been very

helpful in explaining things to me or being able to address my

fatigue. I'd like to find out if anyone has been able to treat there

fatigue with success. Also my PSC has started mostly in the Bilary

Tree on the left side and don't know if the progression will go to my

liver sooner than if it had started in the CBD. Lately, my cholestrol

has become high and would like to know if that is because of the

disease in the ducts or the liver. I'm quite thin and can't believe

that my cholesterol is high. Thanks.

[Guest guest]

Hi Penny,

Thanks for the info. I see my doctor in 2 weeks, and will ask him about the possiblity of involvement of the gallbladder. I have realized that the doctors do not know much about this disease from all the questions I have tried to get answered.

Sincerely,

Enid

To: Sent: Friday, February 20, 2009 8:04:50 AMSubject: Re: New Member

-Hi Enid,As we always say, I'm sorry you need to be here, but you have found awonderful caring group of people, many of whom know more about PSCthan most doctors. Never hesitate to ask questions, but you mightwant to prowl around the site and look at the links, etc.As for your cholesterol, I had always had lower than averagecholestrol and, when it spiked in the fall of 1996, my doctor lookedfor a reason and found gallstones in my CBD and gallbladder. The ERCPto deal with them resulted in the PSC diagnosis.Penny-- In @ yahoogroups. com, "offgridaudio" <offgridaudio@ ...>wrote:>> Hi, My name is Enid Cresson. Lately, my cholestrol > has become high and would like to know if that is because of the > disease in the ducts or

the liver. I'm quite thin and can't believe > that my cholesterol is high. Thanks.>

[Guest guest]

Hi Penny,

Thanks for the info. I see my doctor in 2 weeks, and will ask him about the possiblity of involvement of the gallbladder. I have realized that the doctors do not know much about this disease from all the questions I have tried to get answered.

Sincerely,

Enid

To: Sent: Friday, February 20, 2009 8:04:50 AMSubject: Re: New Member

-Hi Enid,As we always say, I'm sorry you need to be here, but you have found awonderful caring group of people, many of whom know more about PSCthan most doctors. Never hesitate to ask questions, but you mightwant to prowl around the site and look at the links, etc.As for your cholesterol, I had always had lower than averagecholestrol and, when it spiked in the fall of 1996, my doctor lookedfor a reason and found gallstones in my CBD and gallbladder. The ERCPto deal with them resulted in the PSC diagnosis.Penny-- In @ yahoogroups. com, "offgridaudio" <offgridaudio@ ...>wrote:>> Hi, My name is Enid Cresson. Lately, my cholestrol > has become high and would like to know if that is because of the > disease in the ducts or

the liver. I'm quite thin and can't believe > that my cholesterol is high. Thanks.>

[Guest guest]

Hi Penny,

Thanks for the info. I see my doctor in 2 weeks, and will ask him about the possiblity of involvement of the gallbladder. I have realized that the doctors do not know much about this disease from all the questions I have tried to get answered.

Sincerely,

Enid

To: Sent: Friday, February 20, 2009 8:04:50 AMSubject: Re: New Member

-Hi Enid,As we always say, I'm sorry you need to be here, but you have found awonderful caring group of people, many of whom know more about PSCthan most doctors. Never hesitate to ask questions, but you mightwant to prowl around the site and look at the links, etc.As for your cholesterol, I had always had lower than averagecholestrol and, when it spiked in the fall of 1996, my doctor lookedfor a reason and found gallstones in my CBD and gallbladder. The ERCPto deal with them resulted in the PSC diagnosis.Penny-- In @ yahoogroups. com, "offgridaudio" <offgridaudio@ ...>wrote:>> Hi, My name is Enid Cresson. Lately, my cholestrol > has become high and would like to know if that is because of the > disease in the ducts or

the liver. I'm quite thin and can't believe > that my cholesterol is high. Thanks.>

[Guest guest]

Hi ,

Glad you found us but sorry you had to find us. I will start out by saying that

I have been sick since 1994 with symptoms of PSC; however, I was not diagnosed

until 2003. Given my symptoms I have had it for over 15 years and am still

going strong. Your husbands symptoms sound very similar to mine, I throw up a

lot, belch a lot, my urine is orange. I am going through a bout of weight loss

right now. The fatigue, oh my what can I say. Your husband may have PSC and UC

or Crohns they often run together.

SOme one else gave you the links to some of the literature, please read them and

ask us and the doctors a lot of questions.

The people on this site are really great.

Dawn

>

> hello

> My husband was recently diagonesed with psc about a month ago.  I have alot of

questions for one before we got the diagonisis he was first diagonesed, with

chrohns, then they took that back and said he had ulcerative colonitis, then

they took that back now he has psc.  The symptons were within the past year he

dropped about 4o pounds, now i have been with my husband for 14 years and he has

always been itching, so they said his enzymes were up we never thought much of

the itching all these years.Another thing that makes our situation complicated

is that as a child he was born with an enlarged liver and he was really sick

from the age of 6 till about ten he used to throw up couldnt eat or anything

then he was treated with predisone and everything stopped we cannot get hold of

these earlier records because they did not keep records back then we are relying

on his mom's memory so now during the past year his urine went from regular

color to orange to that

> dirty color he had pancretis about 2 months ago so they removed his

gallbladder, then they gave him and ercp they said the removed stones and slush

and that's what caused the pancreatis, we came home only two weeks later and he

was still throwing up and still sick we went back to the hospital and they did

another ercp and said they had left some gallstones in there. The thing i don't

understand is they say he has had liver disease for about 15 years but i thought

you cannot survive past ten years. They have him on uradosil, pentanasa,

cholestraynamine, asocal.  He is always tired and he can only eat so much if he

eats too much he throws up, and if he is not throwing up he is puping everything

he ate he is weak he cannot gain any weight. Now his ankles, knees are swollen I

dont know we go back to his doctor on the 17th of april, but i dont think they

are getting right, i have made another appointment with another liver doctor, i

would appreciate any

> suggestions or any feedback. My husband is 44 years old.

>  

> lost and confused

>

[Guest guest]

Hi ,

Glad you found us but sorry you had to find us. I will start out by saying that

I have been sick since 1994 with symptoms of PSC; however, I was not diagnosed

until 2003. Given my symptoms I have had it for over 15 years and am still

going strong. Your husbands symptoms sound very similar to mine, I throw up a

lot, belch a lot, my urine is orange. I am going through a bout of weight loss

right now. The fatigue, oh my what can I say. Your husband may have PSC and UC

or Crohns they often run together.

SOme one else gave you the links to some of the literature, please read them and

ask us and the doctors a lot of questions.

The people on this site are really great.

Dawn

>

> hello

> My husband was recently diagonesed with psc about a month ago.  I have alot of

questions for one before we got the diagonisis he was first diagonesed, with

chrohns, then they took that back and said he had ulcerative colonitis, then

they took that back now he has psc.  The symptons were within the past year he

dropped about 4o pounds, now i have been with my husband for 14 years and he has

always been itching, so they said his enzymes were up we never thought much of

the itching all these years.Another thing that makes our situation complicated

is that as a child he was born with an enlarged liver and he was really sick

from the age of 6 till about ten he used to throw up couldnt eat or anything

then he was treated with predisone and everything stopped we cannot get hold of

these earlier records because they did not keep records back then we are relying

on his mom's memory so now during the past year his urine went from regular

color to orange to that

> dirty color he had pancretis about 2 months ago so they removed his

gallbladder, then they gave him and ercp they said the removed stones and slush

and that's what caused the pancreatis, we came home only two weeks later and he

was still throwing up and still sick we went back to the hospital and they did

another ercp and said they had left some gallstones in there. The thing i don't

understand is they say he has had liver disease for about 15 years but i thought

you cannot survive past ten years. They have him on uradosil, pentanasa,

cholestraynamine, asocal.  He is always tired and he can only eat so much if he

eats too much he throws up, and if he is not throwing up he is puping everything

he ate he is weak he cannot gain any weight. Now his ankles, knees are swollen I

dont know we go back to his doctor on the 17th of april, but i dont think they

are getting right, i have made another appointment with another liver doctor, i

would appreciate any

> suggestions or any feedback. My husband is 44 years old.

>  

> lost and confused

>

[Guest guest]

Hi ,

Welcome!

One thing that I don’t think anyone has mentioned is that

it’s not uncommon for PSC to be misdiagnosed at first. There are a lot of

different things that have similar symptoms and blood test results. I’m

sure I had PSC for at least 10 years before diagnosis, but even with liver biopsies,

they didn’t get it.

First they thought maybe I had rheumatoid arthritis because the rheumatoid

factor was up, but I never got any symptoms of that. Then the liver enzymes

went up and they tested me for every kind of hepatitis under the sun. All

negative. Then they decided I had autoimmune hepatitis – so was treated

for that for over a year before the infections started. Then they found a stricture

in the common bile duct, but thought it was due to the long range effects of a

birth defect, removed my common bile duct – well, replaced it with

intestinal material. When the infections didn’t stop, they thought

secondary sclerosing cholangitis from the blockage in my common bile duct.

Finally PSC.

Each of those doctors was doing the best they could with the

information at hand. It just took the disease progressing to a certain point

before they could come up with a firm diagnosis.

Nita

[Guest guest]

Hi ,

Welcome!

One thing that I don’t think anyone has mentioned is that

it’s not uncommon for PSC to be misdiagnosed at first. There are a lot of

different things that have similar symptoms and blood test results. I’m

sure I had PSC for at least 10 years before diagnosis, but even with liver biopsies,

they didn’t get it.

First they thought maybe I had rheumatoid arthritis because the rheumatoid

factor was up, but I never got any symptoms of that. Then the liver enzymes

went up and they tested me for every kind of hepatitis under the sun. All

negative. Then they decided I had autoimmune hepatitis – so was treated

for that for over a year before the infections started. Then they found a stricture

in the common bile duct, but thought it was due to the long range effects of a

birth defect, removed my common bile duct – well, replaced it with

intestinal material. When the infections didn’t stop, they thought

secondary sclerosing cholangitis from the blockage in my common bile duct.

Finally PSC.

Each of those doctors was doing the best they could with the

information at hand. It just took the disease progressing to a certain point

before they could come up with a firm diagnosis.

Nita

[Guest guest]

Hi ,

Welcome!

One thing that I don’t think anyone has mentioned is that

it’s not uncommon for PSC to be misdiagnosed at first. There are a lot of

different things that have similar symptoms and blood test results. I’m

sure I had PSC for at least 10 years before diagnosis, but even with liver biopsies,

they didn’t get it.

First they thought maybe I had rheumatoid arthritis because the rheumatoid

factor was up, but I never got any symptoms of that. Then the liver enzymes

went up and they tested me for every kind of hepatitis under the sun. All

negative. Then they decided I had autoimmune hepatitis – so was treated

for that for over a year before the infections started. Then they found a stricture

in the common bile duct, but thought it was due to the long range effects of a

birth defect, removed my common bile duct – well, replaced it with

intestinal material. When the infections didn’t stop, they thought

secondary sclerosing cholangitis from the blockage in my common bile duct.

Finally PSC.

Each of those doctors was doing the best they could with the

information at hand. It just took the disease progressing to a certain point

before they could come up with a firm diagnosis.

Nita