Re: (psc support) first signs and symptoms

[Guest guest]

Hello,

I’m so glad you found us too. If you do have PSC, and it

sounds like it’s a possibility, life is not as bleak as the doctor has

led you to believe. In some people the disease progresses quite slowly. Look at

me – I’m 62 and have probably had this disease for years and years.

Some folks die of natural causes before their livers are really shot. Even if

the disease progresses faster, transplants offer real hope.

I’m a little confused about your common bile duct. A

dilated bile duct usually means that a duct farther down the tree has been

strictured and the bile has backed up to stretch the duct out. Since it’s

your common bile duct, I wouldn’t expect a dilation if there isn’t

a stricture closer to the intestines. It’s always possible they will find

one when they do the ERCP. But in my experience it’s usually the internal

ducts that get dilated.

For me, the first signs were elevated liver enzymes.

Particularly ALT, alkaline phosphatase, and GGC. Then in 2003 I started getting

fevers and chills, and they couldn’t figure out what was going on. Looking

back, I can see that it was all connected, but at the time, they never tested

my enzymes when I had the fevers, so they just didn’t add up 2 and 2.

Finally I got a very bad infection and went to the emergency room. They did

tests for almost a week and called me the mystery woman. Finally they tried a

HIDA scan. The nuclear material was supposed to be grabbed by the liver, go

into the gall bladder, and finally into my intestines. It went nowhere. They

waited an hour and checked again – nothing. So that’s when they

decided that I had a stricture in my common bile duct. That was in 2005. They

operated and did a Rue-en-Y to make me a new duct and said that would take care

of the problem – Ha!

6 months later I started getting fevers again. I didn’t get

a firm diagnosis until fall of 2008 after another long spell in the hospital.

It’s good to know what’s wrong with me. But not the best diagnosis.

I’m on the transplant list – have a full biliary drain in so even

though the liver is totally shot, my enzyme levels are pretty low and most of

the time I feel ok. The tube puts me at a MELD of 20, and my hope is that I can

be transplanted while I’m still relatively well, so I recover faster.

Your best bet if this is your diagnosis is to find a really good

hepatologist – not just a GI guy. Preferably one that is connected to a

transplant center and is familiar with this disease and the latest treatments. At

first, you would probably only need a follow-up every 6 months to a year, so

even if you had to travel a bit, it would be worth it to know that the people

in charge of your care know your disease. Looking on the Internet:

http://www.nhslothian.scot.nhs.uk/ourservices/livertransplant/

This seems to be the big research, testing, and transplant

center in Scotland. Hope this helps!

Anita

===================

From:

[mailto: ] On Behalf Of mazza262002

could people tell me what their first signs and symptoms were and if you think

mine are indicative of this?

I am really lost and alone over here and dont know where to turn, gp gets

annoyed with all my questions and doesnt understand my fear for me and my

babies and what the future holds, i would have thought my liver enzymes would

have got worse if ive had this for a while and perhaps would have had more

symptoms than just upper right pain and tiredness which i assume is from

looking after 5 kiddies? maybe i am clutching at straws!

[Guest guest]

Hello,

I’m so glad you found us too. If you do have PSC, and it

sounds like it’s a possibility, life is not as bleak as the doctor has

led you to believe. In some people the disease progresses quite slowly. Look at

me – I’m 62 and have probably had this disease for years and years.

Some folks die of natural causes before their livers are really shot. Even if

the disease progresses faster, transplants offer real hope.

I’m a little confused about your common bile duct. A

dilated bile duct usually means that a duct farther down the tree has been

strictured and the bile has backed up to stretch the duct out. Since it’s

your common bile duct, I wouldn’t expect a dilation if there isn’t

a stricture closer to the intestines. It’s always possible they will find

one when they do the ERCP. But in my experience it’s usually the internal

ducts that get dilated.

For me, the first signs were elevated liver enzymes.

Particularly ALT, alkaline phosphatase, and GGC. Then in 2003 I started getting

fevers and chills, and they couldn’t figure out what was going on. Looking

back, I can see that it was all connected, but at the time, they never tested

my enzymes when I had the fevers, so they just didn’t add up 2 and 2.

Finally I got a very bad infection and went to the emergency room. They did

tests for almost a week and called me the mystery woman. Finally they tried a

HIDA scan. The nuclear material was supposed to be grabbed by the liver, go

into the gall bladder, and finally into my intestines. It went nowhere. They

waited an hour and checked again – nothing. So that’s when they

decided that I had a stricture in my common bile duct. That was in 2005. They

operated and did a Rue-en-Y to make me a new duct and said that would take care

of the problem – Ha!

6 months later I started getting fevers again. I didn’t get

a firm diagnosis until fall of 2008 after another long spell in the hospital.

It’s good to know what’s wrong with me. But not the best diagnosis.

I’m on the transplant list – have a full biliary drain in so even

though the liver is totally shot, my enzyme levels are pretty low and most of

the time I feel ok. The tube puts me at a MELD of 20, and my hope is that I can

be transplanted while I’m still relatively well, so I recover faster.

Your best bet if this is your diagnosis is to find a really good

hepatologist – not just a GI guy. Preferably one that is connected to a

transplant center and is familiar with this disease and the latest treatments. At

first, you would probably only need a follow-up every 6 months to a year, so

even if you had to travel a bit, it would be worth it to know that the people

in charge of your care know your disease. Looking on the Internet:

http://www.nhslothian.scot.nhs.uk/ourservices/livertransplant/

This seems to be the big research, testing, and transplant

center in Scotland. Hope this helps!

Anita

===================

From:

[mailto: ] On Behalf Of mazza262002

could people tell me what their first signs and symptoms were and if you think

mine are indicative of this?

I am really lost and alone over here and dont know where to turn, gp gets

annoyed with all my questions and doesnt understand my fear for me and my

babies and what the future holds, i would have thought my liver enzymes would

have got worse if ive had this for a while and perhaps would have had more

symptoms than just upper right pain and tiredness which i assume is from

looking after 5 kiddies? maybe i am clutching at straws!

[Guest guest]

First of all, welcome to a group everyone here wishes they didn't need to be a member of. I'm sure you'll find it helpful - but probably overwhelming.My 18 daughter is new to her PSC diagnosis so learning what to expect is new, but we now know has been living with it (including one of the most maddening symptoms) at least since the 05/06 school year.Amazing how many random things are connected with liver. During high school she had bouts of itching that drove her crazy. No clue what caused the itching, but nothing satisfied it. She also had a very odd sleep schedule - I thought she was just my daughter (my body clock doesn't wind down until around 2 AM - hers seemed to run down around 6 AM - good for all nighters, but not so good otherwise for the typical high school schedule). Turns out being unable to sleep on a

regular schedule is another symptom. There were also times when she told me she just couldn't think - it ultimately didn't keep her from being valedictorian and getting into a top college - but it was odd that someone who performs that well academically "can't" think.The bouts never lasted long in high school, but this year the problem has been dramatically worse. She had her worst bout of not being able to think right at the end of first semester this (freshman) year - had to take two incompletes when she stared at her computer screen the entire night before one of the papers was due, chattering madly about whatever ran through her mind one moment - just sitting and staring the next, and then back to latching onto any distraction available.So - fatigue, insomnia, "brain fog," itching, irregular periods, belching, some abdominal pain and bloating. She also had a month when she had one virus after another (that got her

to the college for the first blood test which suggest there might be something going on with her liver). Others in this group (or the mom's group - I can't remember which one) said they have problems with viruses hitting harder and longer than they hit others. Her numbers were pretty low - ALT and AST betwen 50 and 60, GGT between 110 and 150. Bilirubin normal (I think .3, but I don't recall for sure).Aside from the low numbers (aside from the GGT), pretty much the same symptoms as any other liver disorder. I don't know all of what you have been through - but my daughter's doc prefers MRCP to ERCP because it is less invasive. My understanding is that for diagnostic purposes it is almost as reliable (but somewhat dependent on the skill of the radiologist). It avoids the risk of pancreatitis. If s/he hasn't discussed it, you might want to ask.I won't be much help as far as how life is

likely to be long term - but if you want to chat/commiserate with someone just through the diagnostic process (with her daughter), let me know. (I also know second hand about having 5 kiddies and how tired it can make even a healthy person - my siblings and I are 49, 49, 50, 52, and 53. We were quite a handful. I think my mom thought it was a treat to be in the hospital for a hysterectomy when I was 12 - it gave her a break!) You might also want to think about a counselor - with your littlest one only 6 months, you could have a good bout of post-partum depression complicating things (and my daughter is considering going to a counselor just to help her deal with this diagnosis)., Mom to 18 yo daughter UC 6/95, PSC 3/09Hi all, so glad and relieved I found you all, I am currently waiting

for an official diagnosis of psc, my gp thinks it is this disease and i

need an ercp to confirm,could people tell me what their first signs and symptoms were and if you think mine are indicative of this? I am very frightened as a 32 year old mother of 5 kids aged, 9, 8, 4, 2

and 6 months, i have gone through a very dark period of depression and

terror over this as all dr says is very fatalistic and that there seems

like very little hope with this condition

[Guest guest]

First of all, welcome to a group everyone here wishes they didn't need to be a member of. I'm sure you'll find it helpful - but probably overwhelming.My 18 daughter is new to her PSC diagnosis so learning what to expect is new, but we now know has been living with it (including one of the most maddening symptoms) at least since the 05/06 school year.Amazing how many random things are connected with liver. During high school she had bouts of itching that drove her crazy. No clue what caused the itching, but nothing satisfied it. She also had a very odd sleep schedule - I thought she was just my daughter (my body clock doesn't wind down until around 2 AM - hers seemed to run down around 6 AM - good for all nighters, but not so good otherwise for the typical high school schedule). Turns out being unable to sleep on a

regular schedule is another symptom. There were also times when she told me she just couldn't think - it ultimately didn't keep her from being valedictorian and getting into a top college - but it was odd that someone who performs that well academically "can't" think.The bouts never lasted long in high school, but this year the problem has been dramatically worse. She had her worst bout of not being able to think right at the end of first semester this (freshman) year - had to take two incompletes when she stared at her computer screen the entire night before one of the papers was due, chattering madly about whatever ran through her mind one moment - just sitting and staring the next, and then back to latching onto any distraction available.So - fatigue, insomnia, "brain fog," itching, irregular periods, belching, some abdominal pain and bloating. She also had a month when she had one virus after another (that got her

to the college for the first blood test which suggest there might be something going on with her liver). Others in this group (or the mom's group - I can't remember which one) said they have problems with viruses hitting harder and longer than they hit others. Her numbers were pretty low - ALT and AST betwen 50 and 60, GGT between 110 and 150. Bilirubin normal (I think .3, but I don't recall for sure).Aside from the low numbers (aside from the GGT), pretty much the same symptoms as any other liver disorder. I don't know all of what you have been through - but my daughter's doc prefers MRCP to ERCP because it is less invasive. My understanding is that for diagnostic purposes it is almost as reliable (but somewhat dependent on the skill of the radiologist). It avoids the risk of pancreatitis. If s/he hasn't discussed it, you might want to ask.I won't be much help as far as how life is

likely to be long term - but if you want to chat/commiserate with someone just through the diagnostic process (with her daughter), let me know. (I also know second hand about having 5 kiddies and how tired it can make even a healthy person - my siblings and I are 49, 49, 50, 52, and 53. We were quite a handful. I think my mom thought it was a treat to be in the hospital for a hysterectomy when I was 12 - it gave her a break!) You might also want to think about a counselor - with your littlest one only 6 months, you could have a good bout of post-partum depression complicating things (and my daughter is considering going to a counselor just to help her deal with this diagnosis)., Mom to 18 yo daughter UC 6/95, PSC 3/09Hi all, so glad and relieved I found you all, I am currently waiting

for an official diagnosis of psc, my gp thinks it is this disease and i

need an ercp to confirm,could people tell me what their first signs and symptoms were and if you think mine are indicative of this? I am very frightened as a 32 year old mother of 5 kids aged, 9, 8, 4, 2

and 6 months, i have gone through a very dark period of depression and

terror over this as all dr says is very fatalistic and that there seems

like very little hope with this condition

[Guest guest]

First of all, welcome to a group everyone here wishes they didn't need to be a member of. I'm sure you'll find it helpful - but probably overwhelming.My 18 daughter is new to her PSC diagnosis so learning what to expect is new, but we now know has been living with it (including one of the most maddening symptoms) at least since the 05/06 school year.Amazing how many random things are connected with liver. During high school she had bouts of itching that drove her crazy. No clue what caused the itching, but nothing satisfied it. She also had a very odd sleep schedule - I thought she was just my daughter (my body clock doesn't wind down until around 2 AM - hers seemed to run down around 6 AM - good for all nighters, but not so good otherwise for the typical high school schedule). Turns out being unable to sleep on a

regular schedule is another symptom. There were also times when she told me she just couldn't think - it ultimately didn't keep her from being valedictorian and getting into a top college - but it was odd that someone who performs that well academically "can't" think.The bouts never lasted long in high school, but this year the problem has been dramatically worse. She had her worst bout of not being able to think right at the end of first semester this (freshman) year - had to take two incompletes when she stared at her computer screen the entire night before one of the papers was due, chattering madly about whatever ran through her mind one moment - just sitting and staring the next, and then back to latching onto any distraction available.So - fatigue, insomnia, "brain fog," itching, irregular periods, belching, some abdominal pain and bloating. She also had a month when she had one virus after another (that got her

to the college for the first blood test which suggest there might be something going on with her liver). Others in this group (or the mom's group - I can't remember which one) said they have problems with viruses hitting harder and longer than they hit others. Her numbers were pretty low - ALT and AST betwen 50 and 60, GGT between 110 and 150. Bilirubin normal (I think .3, but I don't recall for sure).Aside from the low numbers (aside from the GGT), pretty much the same symptoms as any other liver disorder. I don't know all of what you have been through - but my daughter's doc prefers MRCP to ERCP because it is less invasive. My understanding is that for diagnostic purposes it is almost as reliable (but somewhat dependent on the skill of the radiologist). It avoids the risk of pancreatitis. If s/he hasn't discussed it, you might want to ask.I won't be much help as far as how life is

likely to be long term - but if you want to chat/commiserate with someone just through the diagnostic process (with her daughter), let me know. (I also know second hand about having 5 kiddies and how tired it can make even a healthy person - my siblings and I are 49, 49, 50, 52, and 53. We were quite a handful. I think my mom thought it was a treat to be in the hospital for a hysterectomy when I was 12 - it gave her a break!) You might also want to think about a counselor - with your littlest one only 6 months, you could have a good bout of post-partum depression complicating things (and my daughter is considering going to a counselor just to help her deal with this diagnosis)., Mom to 18 yo daughter UC 6/95, PSC 3/09Hi all, so glad and relieved I found you all, I am currently waiting

for an official diagnosis of psc, my gp thinks it is this disease and i

need an ercp to confirm,could people tell me what their first signs and symptoms were and if you think mine are indicative of this? I am very frightened as a 32 year old mother of 5 kids aged, 9, 8, 4, 2

and 6 months, i have gone through a very dark period of depression and

terror over this as all dr says is very fatalistic and that there seems

like very little hope with this condition

[Guest guest]

The possibility of a PSC diagnosis can be chilling and you have every right to

be concerned -- I'd be worried about you if you weren't. You might consider

talking to a psychologist who deals with patients with serious illnesses. That

person can reassure you that your concerns are well-founded and give you

support. That empowers you.

As we all usually say, I'm sorry you have found a need to be here, but you will

soon find out how awesome and supportive this group can be. Many people in this

group know as much about PSC as most doctors do and will be both helpful and

candid when you ask questions. So, never hesitate to ask!

As for me, I was very ill and I had the beeper and was supposed to be

transplanted by August 1997 due to some rather catastrophic damage done by a

routine test that I did not tolerate well. It was rare for me to go a month

without hospitalization. I still have my own liver with only one minor area

that may show a stricture. I recently switched doctors and my new

gastroenterologist actually questioned my diagnosis until she saw the MRCP

results showing that area. That's how well I am doing. Others have had a rapid

progression of their illness and have progressed to transplant. PSC symptoms

and progression vary from person to person.

One of the things that I feel is very important is to find a doctor who is

up-to-date on the illness and related treatment and research and who is open

enough to be your partner in guiding your care. My former doctor wanted to pass

edicts, the new one is willing to listen to me and act appropriately. We have a

partnership. I value that.

Penny

-- In , " mazza262002 " wrote:

> how long has everyone had this before transplant?

> how did you cope in the beginning?

>

[Guest guest]

The possibility of a PSC diagnosis can be chilling and you have every right to

be concerned -- I'd be worried about you if you weren't. You might consider

talking to a psychologist who deals with patients with serious illnesses. That

person can reassure you that your concerns are well-founded and give you

support. That empowers you.

As we all usually say, I'm sorry you have found a need to be here, but you will

soon find out how awesome and supportive this group can be. Many people in this

group know as much about PSC as most doctors do and will be both helpful and

candid when you ask questions. So, never hesitate to ask!

As for me, I was very ill and I had the beeper and was supposed to be

transplanted by August 1997 due to some rather catastrophic damage done by a

routine test that I did not tolerate well. It was rare for me to go a month

without hospitalization. I still have my own liver with only one minor area

that may show a stricture. I recently switched doctors and my new

gastroenterologist actually questioned my diagnosis until she saw the MRCP

results showing that area. That's how well I am doing. Others have had a rapid

progression of their illness and have progressed to transplant. PSC symptoms

and progression vary from person to person.

One of the things that I feel is very important is to find a doctor who is

up-to-date on the illness and related treatment and research and who is open

enough to be your partner in guiding your care. My former doctor wanted to pass

edicts, the new one is willing to listen to me and act appropriately. We have a

partnership. I value that.

Penny

-- In , " mazza262002 " wrote:

> how long has everyone had this before transplant?

> how did you cope in the beginning?

>

[Guest guest]

The possibility of a PSC diagnosis can be chilling and you have every right to

be concerned -- I'd be worried about you if you weren't. You might consider

talking to a psychologist who deals with patients with serious illnesses. That

person can reassure you that your concerns are well-founded and give you

support. That empowers you.

As we all usually say, I'm sorry you have found a need to be here, but you will

soon find out how awesome and supportive this group can be. Many people in this

group know as much about PSC as most doctors do and will be both helpful and

candid when you ask questions. So, never hesitate to ask!

As for me, I was very ill and I had the beeper and was supposed to be

transplanted by August 1997 due to some rather catastrophic damage done by a

routine test that I did not tolerate well. It was rare for me to go a month

without hospitalization. I still have my own liver with only one minor area

that may show a stricture. I recently switched doctors and my new

gastroenterologist actually questioned my diagnosis until she saw the MRCP

results showing that area. That's how well I am doing. Others have had a rapid

progression of their illness and have progressed to transplant. PSC symptoms

and progression vary from person to person.

One of the things that I feel is very important is to find a doctor who is

up-to-date on the illness and related treatment and research and who is open

enough to be your partner in guiding your care. My former doctor wanted to pass

edicts, the new one is willing to listen to me and act appropriately. We have a

partnership. I value that.

Penny

-- In , " mazza262002 " wrote:

> how long has everyone had this before transplant?

> how did you cope in the beginning?

>

[Guest guest]

Hi and welcome,

 

Because there are a lot of liver diseases it could be, you will have to wait for the test results to know what the diagnoses is. The is no " typical " for PSC. Some people have lots of symptoms (not all the same) and others have very few. Some seem to progress to needing a liver transplant very quickly, but others of us not. Some have a lot of symptoms early but then they go away for a while. They seem to be very close (less then 10 years) to being able to grow organs from your own cells. That will make transplants much easier (no rejection), so be encouraged. By the way, I was diagnosed in 1989 when I was 33 and I still have my original liver.

 

Ian (52) PSC 89 

Hi all, so glad and relieved I found you all, I am currently waiting for an official diagnosis of psc, my gp thinks it is this disease and i need an ercp to confirm, my symptoms have been mildly raised alk phos of around 130-160 for 4 years and the normal range is up to 105,it has also returned to normal on a numer of occasions within this period of time. my ggt has been around 58-60 normal range 45 and all other liver enzymes within normal range, I have been found to have a mildly dilated common bile duct, have quite moderate upper right pain under right rib and around same place in my back for 8 weeks which lead to me going to get checked out, I have tested very weakly positive for ana antibody at 1:40 which apparently may not even be significant, i have also got fatty liver which is what they diagnosed 4 years ago when myliver enzymes became abnormal, finally for 2 weeks i had an episode of a tiny amount of blood and mucus in my stool(hopefully not too uch info)which has now stopped, i felt it was down to anxiety and possibly mild piles but dr said could be UC

#Right now i am very confused because for ages i have been told fatty liver although i tried to push for further testing and now after all this time they are now saying psc, all my other blood work CBC etc came back normal i think. I am very frightened as a 32 year old mother of 5 kids aged, 9, 8, 4, 2 and 6 months, i have gone through a very dark period of depression and terror over this as all dr says is very fatalistic and that there seems like very little hope with this condition, i get the feeling you are all quite positive about things which has really helped me get things in perspective and there seems like a lot of love and care for each other, this disease is almost unknown here in scotland it would seem although the support group people are brilliant and very helpful, whatever comes of my diagnosis whether i have this or not i will make it my life's aim to raise the profile of this to help others, in the meantime

could people tell me what their first signs and symptoms were and if you think mine are indicative of this? I am really lost and alone over here and dont know where to turn, gp gets annoyed with all my questions and doesnt understand my fear for me and my babies and what the future holds, i would have thought my liver enzymes would have got worse if ive had this for a while and perhaps would have had more symptoms than just upper right pain and tiredness which i assume is from looking after 5 kiddies? maybe i am clutching at straws!

how long has everyone had this before transplant?how did you cope in the beginning?please forgive my long winded mail but trust you will be halping me so much by replying, may God bless you all for all you do for each other,love and prayers for all.x

-- Ian Cribb  P.Eng.cell: Enefen - Reviewer/Designerwww.enefen.com

[Guest guest]

Hi and welcome,

 

Because there are a lot of liver diseases it could be, you will have to wait for the test results to know what the diagnoses is. The is no " typical " for PSC. Some people have lots of symptoms (not all the same) and others have very few. Some seem to progress to needing a liver transplant very quickly, but others of us not. Some have a lot of symptoms early but then they go away for a while. They seem to be very close (less then 10 years) to being able to grow organs from your own cells. That will make transplants much easier (no rejection), so be encouraged. By the way, I was diagnosed in 1989 when I was 33 and I still have my original liver.

 

Ian (52) PSC 89 

Hi all, so glad and relieved I found you all, I am currently waiting for an official diagnosis of psc, my gp thinks it is this disease and i need an ercp to confirm, my symptoms have been mildly raised alk phos of around 130-160 for 4 years and the normal range is up to 105,it has also returned to normal on a numer of occasions within this period of time. my ggt has been around 58-60 normal range 45 and all other liver enzymes within normal range, I have been found to have a mildly dilated common bile duct, have quite moderate upper right pain under right rib and around same place in my back for 8 weeks which lead to me going to get checked out, I have tested very weakly positive for ana antibody at 1:40 which apparently may not even be significant, i have also got fatty liver which is what they diagnosed 4 years ago when myliver enzymes became abnormal, finally for 2 weeks i had an episode of a tiny amount of blood and mucus in my stool(hopefully not too uch info)which has now stopped, i felt it was down to anxiety and possibly mild piles but dr said could be UC

#Right now i am very confused because for ages i have been told fatty liver although i tried to push for further testing and now after all this time they are now saying psc, all my other blood work CBC etc came back normal i think. I am very frightened as a 32 year old mother of 5 kids aged, 9, 8, 4, 2 and 6 months, i have gone through a very dark period of depression and terror over this as all dr says is very fatalistic and that there seems like very little hope with this condition, i get the feeling you are all quite positive about things which has really helped me get things in perspective and there seems like a lot of love and care for each other, this disease is almost unknown here in scotland it would seem although the support group people are brilliant and very helpful, whatever comes of my diagnosis whether i have this or not i will make it my life's aim to raise the profile of this to help others, in the meantime

could people tell me what their first signs and symptoms were and if you think mine are indicative of this? I am really lost and alone over here and dont know where to turn, gp gets annoyed with all my questions and doesnt understand my fear for me and my babies and what the future holds, i would have thought my liver enzymes would have got worse if ive had this for a while and perhaps would have had more symptoms than just upper right pain and tiredness which i assume is from looking after 5 kiddies? maybe i am clutching at straws!

how long has everyone had this before transplant?how did you cope in the beginning?please forgive my long winded mail but trust you will be halping me so much by replying, may God bless you all for all you do for each other,love and prayers for all.x

-- Ian Cribb  P.Eng.cell: Enefen - Reviewer/Designerwww.enefen.com

[Guest guest]

Hi,

 

My first symptom was throwing up (I thought I had a flu). Actually I had loss of appetite and weight loss before that, but I did not consider that a problem )  After throwing up I quickly develop jaundice and fever. With in two months they had removed my bile ducts (outside the liver) and replace them with a section of bowel (that was in 1989). For the most part I have been very well ( except for a couple DVTs) since then.

 

Ian (52) PSC 89 

i again, thanks for your kind words and help, it means the world to me, i only have had symptoms of nagging gnawing pain under right ribs front and back and chronic (4 years) fluctuating mildly raised liver enzymes, nothing else really, dont really feel unwell other than this pain, no itching, or other symptoms-hoping dr being over cautious but if i have it then im glad i found you all coz this is so hard to take in since i cant find anyone who knows about it other than online and it all seems a bit doom and gloom, thanks for any advice

what was everyones main symptom orsign which led them to get help or which led to diagnosis?

-- Ian Cribb  P.Eng.cell:  (6...Enefen - Reviewer/Designerwww.enefen.com

[Guest guest]

Hi,

 

My first symptom was throwing up (I thought I had a flu). Actually I had loss of appetite and weight loss before that, but I did not consider that a problem )  After throwing up I quickly develop jaundice and fever. With in two months they had removed my bile ducts (outside the liver) and replace them with a section of bowel (that was in 1989). For the most part I have been very well ( except for a couple DVTs) since then.

 

Ian (52) PSC 89 

i again, thanks for your kind words and help, it means the world to me, i only have had symptoms of nagging gnawing pain under right ribs front and back and chronic (4 years) fluctuating mildly raised liver enzymes, nothing else really, dont really feel unwell other than this pain, no itching, or other symptoms-hoping dr being over cautious but if i have it then im glad i found you all coz this is so hard to take in since i cant find anyone who knows about it other than online and it all seems a bit doom and gloom, thanks for any advice

what was everyones main symptom orsign which led them to get help or which led to diagnosis?

-- Ian Cribb  P.Eng.cell:  (6...Enefen - Reviewer/Designerwww.enefen.com

[Guest guest]

Hi,

 

My first symptom was throwing up (I thought I had a flu). Actually I had loss of appetite and weight loss before that, but I did not consider that a problem )  After throwing up I quickly develop jaundice and fever. With in two months they had removed my bile ducts (outside the liver) and replace them with a section of bowel (that was in 1989). For the most part I have been very well ( except for a couple DVTs) since then.

 

Ian (52) PSC 89 

i again, thanks for your kind words and help, it means the world to me, i only have had symptoms of nagging gnawing pain under right ribs front and back and chronic (4 years) fluctuating mildly raised liver enzymes, nothing else really, dont really feel unwell other than this pain, no itching, or other symptoms-hoping dr being over cautious but if i have it then im glad i found you all coz this is so hard to take in since i cant find anyone who knows about it other than online and it all seems a bit doom and gloom, thanks for any advice

what was everyones main symptom orsign which led them to get help or which led to diagnosis?

-- Ian Cribb  P.Eng.cell:  (6...Enefen - Reviewer/Designerwww.enefen.com

[Guest guest]

Welcome. You will find great support here.

If it gives you any comfort, my husband did just great for 13

years after being diagnosed with psc. There is much hope to be had,

and you are still quite young. It is alarmingly difficult to deal with

the unknown; what happens next? will I need a transplant? am I going

to be able to be a mother and deal with this? So many what if's.

My advice to you would be to find a hepatologist or gastroenterologist

very familiar with psc who will be able to give you better information

than your gp. One of 's non-psc-related drs looked up psc in an

outdated book that said that psc patients had about 7 years max to

live, and there was no treatment. That is no longer true. There is

much hope to be had, and we live productive, meaningful lives.

Together, we support one another through this jungle, and are much

stronger than we would be by ourselves.

About the depression, you do have a full plate. I have 4 of my own,

and often wonder if it is depression I feel or just plain exhaustion.

They feel the same to me, and I am certain it comes down to being an

unpleasant combination of both. Also, if you are having fatigue, which

is a main symptom of psc and is felt both physically and mentally, it

will greatly contribute to any dark terror feelings. Throw in a bit of

post partum....... I'll pray for you.

Just know that we are here for you. It's a great place for information

and empathy.

God Bless,

, wife of (psc 1994, cca 2007, tx 2008)

[Guest guest]

Welcome. You will find great support here.

If it gives you any comfort, my husband did just great for 13

years after being diagnosed with psc. There is much hope to be had,

and you are still quite young. It is alarmingly difficult to deal with

the unknown; what happens next? will I need a transplant? am I going

to be able to be a mother and deal with this? So many what if's.

My advice to you would be to find a hepatologist or gastroenterologist

very familiar with psc who will be able to give you better information

than your gp. One of 's non-psc-related drs looked up psc in an

outdated book that said that psc patients had about 7 years max to

live, and there was no treatment. That is no longer true. There is

much hope to be had, and we live productive, meaningful lives.

Together, we support one another through this jungle, and are much

stronger than we would be by ourselves.

About the depression, you do have a full plate. I have 4 of my own,

and often wonder if it is depression I feel or just plain exhaustion.

They feel the same to me, and I am certain it comes down to being an

unpleasant combination of both. Also, if you are having fatigue, which

is a main symptom of psc and is felt both physically and mentally, it

will greatly contribute to any dark terror feelings. Throw in a bit of

post partum....... I'll pray for you.

Just know that we are here for you. It's a great place for information

and empathy.

God Bless,

, wife of (psc 1994, cca 2007, tx 2008)

[Guest guest]

Hi. First, I want to say welcome to the group. I'm so sorry you have to be

here, but really glad that you found us. Second, you have every right to be

scared and worried and good for you for not suppressing everything and for

wanting to talk about it! PSC can be scary. Sometimes it IS scary. It is NOT

a death sentence though and a lot of the information you find out there on the

web is just outdated or plain old wrong. So, I know it's difficult to do, but

when you find yourself panicking, try to take a deep breath and then come and

talk to us and we'll do our best to get you through this!

It sounds like you've been given/have found some scary information out there and

there are some scary things associated with PSC, but it's also not as dire as

some doctors/sites have you believe. Yes, transplant is something that most PSC

patients face, but not all of us do. Also, there are several members of this

board, I believe, who have had this disease for well over a decade and still

have not needed a transplant. Some PSCers develop symptoms immediately and

others don't. PSC can be rather different in every PSC patient. I think it's

one of the things that makes it so frustrating to have and for our doctors to

figure out.

You asked what were the first symptoms some of us started having. Most PSCers,

myself included, suffer with some form of itching (the feet and legs are common

places for it, but it can really attack anywhere on your body), right upper

quadrant pain - which I sort of describe as a feeling like a really heavy,

prickly brick is lodged up under your ribs (or sometimes it feels more like a

really heavy, full water balloon), and fatigue/exhaustion. This isn't just a

physical tiredness, it's a physical, emotional, mental kind of fatigue that

really is like nothing I'd ever felt before. Some PSCers also experience nausea

and vomiting and jaundice (yellowing of the skin). For me, I had severe

itching, nausea and vomiting. I had lost over 30 lbs without trying and caught

every cold/flu, etc. that was going around and just couldn't seem to get well. I

couldn't even make it through the day without a nap and 7:00 p.m. might as well

have been 4:00 a.m. When I

finally found a decent doctor (after many, many attempts), she found that my

liver levels were 10x the normal and things just started rolling from there.

There are some " sister " diseases to PSC and UC is one of them. It's not

uncommon to find PSC patients with some form of IBS such as Crohns and/or UC.

We also tend to be, from what I understand, a bit prone to other autoimmune

diseases (but somebody correct me on that if I'm wrong, please!).

You mentioned that your doctor doesn't want to discuss your fears with you.

Would it be possible to find another doctor? It really is important, if at all

possible, to find a doctor (generally a hepatologist or GI) who is familiar with

PSC. Even if that doesn't prove possible, I would encourage you to find a

doctor who makes you feel as though it's okay to speak your mind and express

your concerns. Your doctor really does need to be your teammate and you

shouldn't have to censor yourself around them.

I saw in your post that you mentioned that you were 32. I don't know if you're

aware of this yet, but we do have a Facebook PSC Support Group geared towards

those in their 20s and 30s and around those ages that works much like this site.

We do have some young mothers on our PSC FB group as well. If you're interested,

you're more than welcome to join us there as well. To do this, you would just

need a Facebook account. It's free. Once you have a Facebook account, you

could just search PSC Partners Seeking a Cure and our group should pop right up.

You can also contact me (Sandi Pearlman) and I can direct you to the link if

that is easier. On the PSC FB site, we offer each other support, ask questions,

give answers, etc. It's a nice supplement to this site.

I hope I've helped put your mind at least a bit at ease! Please do feel free to

ask any questions that you may have or share any stories along the way. That's

what we're here for! One of the things that is so amazing about this site and

this group of people is that between us, we really have seen it all (or at least

close to it). So, chances are, if you're suffering with something, someone else

in this group has, too. Last, I don't know if you'll be able to make it or if

you'd want to consider it until you have an official diagnosis, but we do have

an upcoming PSC conference in Chicago this year May 1-3rd. It's a great place

to meet other PSCers, ask questions, get answers and hear from leading

researchers and doctors in the field. If you'd like more information about it,

you can either contact me or go to www.pscpartners.org. I really can't

recommend the conference enough for educational, social and peace of mind

purposes!

I hope this e-mail helped at least a little!

Best of luck to you!

Sandi in VA/Rochester

[Guest guest]

Hi. First, I want to say welcome to the group. I'm so sorry you have to be

here, but really glad that you found us. Second, you have every right to be

scared and worried and good for you for not suppressing everything and for

wanting to talk about it! PSC can be scary. Sometimes it IS scary. It is NOT

a death sentence though and a lot of the information you find out there on the

web is just outdated or plain old wrong. So, I know it's difficult to do, but

when you find yourself panicking, try to take a deep breath and then come and

talk to us and we'll do our best to get you through this!

It sounds like you've been given/have found some scary information out there and

there are some scary things associated with PSC, but it's also not as dire as

some doctors/sites have you believe. Yes, transplant is something that most PSC

patients face, but not all of us do. Also, there are several members of this

board, I believe, who have had this disease for well over a decade and still

have not needed a transplant. Some PSCers develop symptoms immediately and

others don't. PSC can be rather different in every PSC patient. I think it's

one of the things that makes it so frustrating to have and for our doctors to

figure out.

You asked what were the first symptoms some of us started having. Most PSCers,

myself included, suffer with some form of itching (the feet and legs are common

places for it, but it can really attack anywhere on your body), right upper

quadrant pain - which I sort of describe as a feeling like a really heavy,

prickly brick is lodged up under your ribs (or sometimes it feels more like a

really heavy, full water balloon), and fatigue/exhaustion. This isn't just a

physical tiredness, it's a physical, emotional, mental kind of fatigue that

really is like nothing I'd ever felt before. Some PSCers also experience nausea

and vomiting and jaundice (yellowing of the skin). For me, I had severe

itching, nausea and vomiting. I had lost over 30 lbs without trying and caught

every cold/flu, etc. that was going around and just couldn't seem to get well. I

couldn't even make it through the day without a nap and 7:00 p.m. might as well

have been 4:00 a.m. When I

finally found a decent doctor (after many, many attempts), she found that my

liver levels were 10x the normal and things just started rolling from there.

There are some " sister " diseases to PSC and UC is one of them. It's not

uncommon to find PSC patients with some form of IBS such as Crohns and/or UC.

We also tend to be, from what I understand, a bit prone to other autoimmune

diseases (but somebody correct me on that if I'm wrong, please!).

You mentioned that your doctor doesn't want to discuss your fears with you.

Would it be possible to find another doctor? It really is important, if at all

possible, to find a doctor (generally a hepatologist or GI) who is familiar with

PSC. Even if that doesn't prove possible, I would encourage you to find a

doctor who makes you feel as though it's okay to speak your mind and express

your concerns. Your doctor really does need to be your teammate and you

shouldn't have to censor yourself around them.

I saw in your post that you mentioned that you were 32. I don't know if you're

aware of this yet, but we do have a Facebook PSC Support Group geared towards

those in their 20s and 30s and around those ages that works much like this site.

We do have some young mothers on our PSC FB group as well. If you're interested,

you're more than welcome to join us there as well. To do this, you would just

need a Facebook account. It's free. Once you have a Facebook account, you

could just search PSC Partners Seeking a Cure and our group should pop right up.

You can also contact me (Sandi Pearlman) and I can direct you to the link if

that is easier. On the PSC FB site, we offer each other support, ask questions,

give answers, etc. It's a nice supplement to this site.

I hope I've helped put your mind at least a bit at ease! Please do feel free to

ask any questions that you may have or share any stories along the way. That's

what we're here for! One of the things that is so amazing about this site and

this group of people is that between us, we really have seen it all (or at least

close to it). So, chances are, if you're suffering with something, someone else

in this group has, too. Last, I don't know if you'll be able to make it or if

you'd want to consider it until you have an official diagnosis, but we do have

an upcoming PSC conference in Chicago this year May 1-3rd. It's a great place

to meet other PSCers, ask questions, get answers and hear from leading

researchers and doctors in the field. If you'd like more information about it,

you can either contact me or go to www.pscpartners.org. I really can't

recommend the conference enough for educational, social and peace of mind

purposes!

I hope this e-mail helped at least a little!

Best of luck to you!

Sandi in VA/Rochester

[Guest guest]

Hi:

When I was 19 or 20 I got diagnosed with UC and went Jaundice. It was then I

was diagnosed with PSC also. I had some itching back then but many years of

symptom free life. Note that I'm 43 now so have had PSC for over 2 decades.

I go to Boston (Dr Kaplan) in addition to my local GI's. I'm a weird patient

since the Biopsy I got done a little over a year ago looked almost the same as

the one 20 years ago. From a diagnostic point I guess my disease hasn't

progressed much.

When I first experienced itching (in the 80's) Questran worked like a miracle

drug. About 3 years ago (I'm still trying to figure out why) the itching

re-appeared and didn't respond well to almost anything. I personally think I

disturbed something in my routine that pissed off my liver. I have had the

URQ pain described before, and for the past 2 years, fatigue has hit me. I've

been on Urso since '94, and high dose urso (2400mg/day - I'm about 215lbs) since

I think around 96 or 98. My liver tests are just about Normal (again). Right

now an extremely low fat diet, and UV light seem to work best, but I think the

diet is best. Also the itching isn't just itching. I've had burning skin,

'crawling' skin, 'popping' (like somebody jabbing you with pins), etc. Some of

that may be due to vitimin deficencies common with PSC. Also when my itching

was worst my bloods were slightly elevated but not by much at all.

As another poster stated it's not a death sentence, PSC is different with all

folks. In my case I guess I've been lucky or I'm doing something that helps

that we can't identify.

Although I've been a lazy slug for the last 6 months (cracked a rib) I'm an avid

workout person (Weightlifter - heavy lifting) and I personally think that's

helped a lot of things. One thing of note is I just had a bone density test

done and not only am I still denser than average for my age, but my bone density

increased from my 2000 to 2009 test.

My suggestion is to try things folks mention and fine tune it to what works for

you. This of course in addition to any medical attention/medication, etc.

For itching you might want to try Questran, Rifampin, Antihistamines, etc.

Anyway, don't lose faith and try and keep a good outlook on life.

>

> i again, thanks for your kind words and help, it means the world to me, i only

have had symptoms of nagging gnawing pain under right ribs front and back and

chronic (4 years) fluctuating mildly raised liver enzymes, nothing else really,

dont really feel unwell other than this pain, no itching, or other

symptoms-hoping dr being over cautious but if i have it then im glad i found you

all coz this is so hard to take in since i cant find anyone who knows about it

other than online and it all seems a bit doom and gloom, thanks for any advice

>

> what was everyones main symptom orsign which led them to get help or which led

to diagnosis?

>

[Guest guest]

Hi:

When I was 19 or 20 I got diagnosed with UC and went Jaundice. It was then I

was diagnosed with PSC also. I had some itching back then but many years of

symptom free life. Note that I'm 43 now so have had PSC for over 2 decades.

I go to Boston (Dr Kaplan) in addition to my local GI's. I'm a weird patient

since the Biopsy I got done a little over a year ago looked almost the same as

the one 20 years ago. From a diagnostic point I guess my disease hasn't

progressed much.

When I first experienced itching (in the 80's) Questran worked like a miracle

drug. About 3 years ago (I'm still trying to figure out why) the itching

re-appeared and didn't respond well to almost anything. I personally think I

disturbed something in my routine that pissed off my liver. I have had the

URQ pain described before, and for the past 2 years, fatigue has hit me. I've

been on Urso since '94, and high dose urso (2400mg/day - I'm about 215lbs) since

I think around 96 or 98. My liver tests are just about Normal (again). Right

now an extremely low fat diet, and UV light seem to work best, but I think the

diet is best. Also the itching isn't just itching. I've had burning skin,

'crawling' skin, 'popping' (like somebody jabbing you with pins), etc. Some of

that may be due to vitimin deficencies common with PSC. Also when my itching

was worst my bloods were slightly elevated but not by much at all.

As another poster stated it's not a death sentence, PSC is different with all

folks. In my case I guess I've been lucky or I'm doing something that helps

that we can't identify.

Although I've been a lazy slug for the last 6 months (cracked a rib) I'm an avid

workout person (Weightlifter - heavy lifting) and I personally think that's

helped a lot of things. One thing of note is I just had a bone density test

done and not only am I still denser than average for my age, but my bone density

increased from my 2000 to 2009 test.

My suggestion is to try things folks mention and fine tune it to what works for

you. This of course in addition to any medical attention/medication, etc.

For itching you might want to try Questran, Rifampin, Antihistamines, etc.

Anyway, don't lose faith and try and keep a good outlook on life.

>

> i again, thanks for your kind words and help, it means the world to me, i only

have had symptoms of nagging gnawing pain under right ribs front and back and

chronic (4 years) fluctuating mildly raised liver enzymes, nothing else really,

dont really feel unwell other than this pain, no itching, or other

symptoms-hoping dr being over cautious but if i have it then im glad i found you

all coz this is so hard to take in since i cant find anyone who knows about it

other than online and it all seems a bit doom and gloom, thanks for any advice

>

> what was everyones main symptom orsign which led them to get help or which led

to diagnosis?

>

[Guest guest]

Hello up there in scotland. I live jus outside of Canterbury in the south east

of england. When i was 17 i had the worse pain ever, childbrith was easier! went

to docs who thought at first it was gullstones. Didnt get anybetter and started

being sick every hr went into hosp - anyway long story short i had liver blood

numbers all v.high and yes now looking back i was always tired. I had a

colonoscopy showed UC - have you been tested for any these? bout 2years later

thanks to new fab gastro i got dx with PSC (as my liver numbers had neva got

back to normal).

As far as everyday symptoms go i have upper right pain, fatigue, and itching. As

everyone else has said we all react to this disease in dif ways. but it is

really important to have a good team of docs. They're like the machanic to your

car - without them being good at their job you the car will start to go dwn

hill.

The fear of future can be overwhelming esp when you have a young family, i am

blessed with a 4yr old daughter. and the thoughts i have sometimes are enough to

put my in a dark hole. however i do take extreme comfort in this group and live

each day at a time and try to focus on the great things i do have like my

daughter and partner.

Hopefully you'll find out some more concrete news soon and we're all here for

you,

best wishes

[Guest guest]

>

> Hello up there in scotland. I live jus outside of Canterbury in the south east

of england. When i was 17 i had the worse pain ever, childbrith was easier! went

to docs who thought at first it was gullstones. Didnt get anybetter and started

being sick every hr went into hosp - anyway long story short i had liver blood

numbers all v.high and yes now looking back i was always tired. I had a

colonoscopy showed UC - have you been tested for any these? bout 2years later

thanks to new fab gastro i got dx with PSC (as my liver numbers had neva got

back to normal).

>

> As far as everyday symptoms go i have upper right pain, fatigue, and itching.

As everyone else has said we all react to this disease in dif ways. but it is

really important to have a good team of docs. They're like the machanic to your

car - without them being good at their job you the car will start to go dwn

hill.

>

> The fear of future can be overwhelming esp when you have a young family, i am

blessed with a 4yr old daughter. and the thoughts i have sometimes are enough to

put my in a dark hole. however i do take extreme comfort in this group and live

each day at a time and try to focus on the great things i do have like my

daughter and partner.

> Hopefully you'll find out some more concrete news soon and we're all here for

you,

> best wishes

>

>

thanks so much for reply, i hope to be able to speak in person to people with

this disease, do you knowwhere this is possible? i have so many questions and

have such little info about this, great to meet someone from uk! thanks again

for your kind words, it means so much to me, never been so frightened in all my

life, wish scan date would hurry so i knew what was going on, hope this mail

finds you well.x

[Guest guest]

>

> Hello up there in scotland. I live jus outside of Canterbury in the south east

of england. When i was 17 i had the worse pain ever, childbrith was easier! went

to docs who thought at first it was gullstones. Didnt get anybetter and started

being sick every hr went into hosp - anyway long story short i had liver blood

numbers all v.high and yes now looking back i was always tired. I had a

colonoscopy showed UC - have you been tested for any these? bout 2years later

thanks to new fab gastro i got dx with PSC (as my liver numbers had neva got

back to normal).

>

> As far as everyday symptoms go i have upper right pain, fatigue, and itching.

As everyone else has said we all react to this disease in dif ways. but it is

really important to have a good team of docs. They're like the machanic to your

car - without them being good at their job you the car will start to go dwn

hill.

>

> The fear of future can be overwhelming esp when you have a young family, i am

blessed with a 4yr old daughter. and the thoughts i have sometimes are enough to

put my in a dark hole. however i do take extreme comfort in this group and live

each day at a time and try to focus on the great things i do have like my

daughter and partner.

> Hopefully you'll find out some more concrete news soon and we're all here for

you,

> best wishes

>

>

thanks so much for reply, i hope to be able to speak in person to people with

this disease, do you knowwhere this is possible? i have so many questions and

have such little info about this, great to meet someone from uk! thanks again

for your kind words, it means so much to me, never been so frightened in all my

life, wish scan date would hurry so i knew what was going on, hope this mail

finds you well.x

[Guest guest]

>

> Hello up there in scotland. I live jus outside of Canterbury in the south east

of england. When i was 17 i had the worse pain ever, childbrith was easier! went

to docs who thought at first it was gullstones. Didnt get anybetter and started

being sick every hr went into hosp - anyway long story short i had liver blood

numbers all v.high and yes now looking back i was always tired. I had a

colonoscopy showed UC - have you been tested for any these? bout 2years later

thanks to new fab gastro i got dx with PSC (as my liver numbers had neva got

back to normal).

>

> As far as everyday symptoms go i have upper right pain, fatigue, and itching.

As everyone else has said we all react to this disease in dif ways. but it is

really important to have a good team of docs. They're like the machanic to your

car - without them being good at their job you the car will start to go dwn

hill.

>

> The fear of future can be overwhelming esp when you have a young family, i am

blessed with a 4yr old daughter. and the thoughts i have sometimes are enough to

put my in a dark hole. however i do take extreme comfort in this group and live

each day at a time and try to focus on the great things i do have like my

daughter and partner.

> Hopefully you'll find out some more concrete news soon and we're all here for

you,

> best wishes

>

>

thanks so much for reply, i hope to be able to speak in person to people with

this disease, do you knowwhere this is possible? i have so many questions and

have such little info about this, great to meet someone from uk! thanks again

for your kind words, it means so much to me, never been so frightened in all my

life, wish scan date would hurry so i knew what was going on, hope this mail

finds you well.x

[Guest guest]

>

> Hello up there in scotland. I live jus outside of Canterbury in the south east

of england. When i was 17 i had the worse pain ever, childbrith was easier! went

to docs who thought at first it was gullstones. Didnt get anybetter and started

being sick every hr went into hosp - anyway long story short i had liver blood

numbers all v.high and yes now looking back i was always tired. I had a

colonoscopy showed UC - have you been tested for any these? bout 2years later

thanks to new fab gastro i got dx with PSC (as my liver numbers had neva got

back to normal).

>

> As far as everyday symptoms go i have upper right pain, fatigue, and itching.

As everyone else has said we all react to this disease in dif ways. but it is

really important to have a good team of docs. They're like the machanic to your

car - without them being good at their job you the car will start to go dwn

hill.

>

> The fear of future can be overwhelming esp whsen you have aa young family, i

am blessed with a 4yr old daught er. and the thoughts i havoe sometimes are

enough to put my in a dark hole. however i do take extretme comfort in thi s

group andt live each day at a time and try to focus oon the great things i do

have like my daughter and partner.

> Hopefully you'll gfind out some more concrrete news soon and we're all heore

for you,

> best wishes

>

>

did you have UC symptoms? forgot to ask that, i had strange bowels for 2weeks,

not loose but tiny amount of blood and mucus on formed 1 a day stools i dont

think it is UC but dr said may be sorry if too much info, but then it went away

and not had blood or anything since. sorry to be a pain with questions but dont

know where else to turn, dr doesnt seem t know much,x

f

[Guest guest]

Hi ya, you can contact me direct on rach8684@... if you'd like if not

there is a uk based support group - http://www..demon.co.uk/.

they have an annual meeting on the 1st Aug in Oxford. my plans at the mo are to

attend but we'll see for def nearer the time.

I can share your fear - mines mostly sits on the side of my partner and

daughter. But as i said this group is jus amazing and really brings me some

comfort when i'm having those scary days.

best wishes