Re: WHO's WHO

[Guest guest]

Great work , but I'm 21 now. Yes, I know...I'm getting old.

LOL

Love,

[Guest guest]

Biddy,

In my efforts to try to get to know and remember everybody, I started a Word

document where I've been attempting to keep track of everybody.

Names/descriptions are listed in alphabetical order so it's easier to find

each of us. It depends on what hour of the day I come upon your stats as to

whether or not you make it into my document. If I'm reading your info at 4

or 5:00 am., I was probably too tired to cut and paste your stuff into the

doc, but I'm cutting and pasting the whole doc here. Add yourself if I

missed you. Maybe we can each add the important stats and compile one big

list. If we all take the most currently dated post with Subject: WHO's WHO

(don't change the subject, so that we can easily identify these postings)

when we add our info, it should be easy enough to keep one current copy. If

I've edited anybody's words in my attempts to summarize your info, please

feel free to change it if it no longer makes sense. Biddy, from this list,

maybe you (or whomever) could edit a copy and re-post according to symptoms,

or whatever. What do you think?

Hope this will be helpful. If you all think this is nuts and won't work, I

promise not to be offended. Just say so!

Hugs to all,

*************************************************************************

Biddy (57) PSC

Home: WV

Dx'd PSC in 1996. Symptoms: Started w/URQ pain. Pain increased in

frequency from monthly to frequent. Red palms w/white center. Has bleeding

ulcers, enlarged spleen, very enlarged liver but is now shrinking from

cirrhoses. Extremely sick at my stomach. Little appetite due to pain.

Ankles & feet beginning to swell.

1966 - had Scaroidosis

1987 - tremendous itching all over body w/no rash - Lasted about 2 to 3

months.

********************************************************************

cstaple-@...

Carol Staple:

Dx 9/89 PSC, UC (lifelong history)

Meds: Actigal

ERCP's (4 of them) all indicated inner & external bile ducts are affected.

Elevated LFT's

Had 3 balloon dilatations of the bile ducts.

********************************************************************

Charlotte Riggle (Charli):

Whose dad has PSC and whose sons have ADD and NVLD)

*************************************************************

Debbie Lynch: UC (1988), PSC (1989 with URQ pain present & bowel problems)

Home: Toronto, Ontario, Canada. 1999:

Meds: Urso, since 1989

Colonoscopy confirmed UC.

Crazy endless itching! Has had very little outward symptoms of PSC.

3 children, 8, 4 1/2, 6 weeks all born after diagnosis.

Early stage cirrhosis, esophageal varices, and splenomegaly, Not listed for

transplant.

***********************************************************

: Dx'd: 6/85; on TX. list at NEMC since 3/98;

Home: NH, Age 54

**********************************************************

Jacquelyn: is POST TX.

1999: Husband, 4, Calvin 2, Christian family.

***********************************************************

Jodi Rhoades (Mom), Married to 's father

: (9) PSC & ADD - used Ritalin

***********************************************************

Kathy (wife) & Jim:(56)

Dx 1991

Listed (transplant) June 1999

Hospital: Oregon Health Sciences University.

Meds: Actigal; Vitamin K & Fosamax-that's for low bone density - indirectly

related to PSC)

Has also worked extensively with a naturopathic MD.

(His supplements include: Silymarin, (Milk Thistle - good studies on this

from OHSU); Vitamin C;

Calcium Magnesium, Vitamin E; Multiple Vitamin; Zinc). Through trial and

error he has discovered foods that 'irritate' his system (i.e., make him

itch). He agrees with the information provided in the book " Eat Right Four

Your Type " by Dr. J. D'Adamo. He has also found good information from

The American Liver Foundation. Whenever there has been a conference that

they have sponsored, Jim has ordered copies of tapes. They've had some good

info. A

very good personal PSC transplant site is:

http://ourworld.compuserve.com/homepages/drbingo/LIVER.

It's graphic, but excellent. There is also a good PBC site

- http://hometown.aol.com/pbcers.

********************************************************

Larry:

Home: MD

Liz: RN (Rnurse987@...)

BBNLU@...

************************************************************

Luanne - 16 year old son Ty, Dx'd at 10.

Ty also has Crohns Disease, Rheumatoid Arthritis, PSC & AIH.

Home: NJ

Hospital: Children's Hospital in Philadelphia PA.

Tyler takes many drugs for his diseases but is doing his best in years.

************************************************************

Marcy (mom)

, 12

Home: ME

************************************************************

Michele Bruno, PSC, NJ

***********************************************************

Pam (mom)

Quantell, 9, Dx 1996 @ 6 y.o.) Believes he had it for 2 years before

diagnosis.

Home: Chicago

Hospital: Children's Memorial

ADD (secondary to Fetal Alcohol Syndrome and Prenatal Drug Exposure) Never

used stimulants. Has had electrical shock therapy.

Meds: 10 mg prednisone every other day

25 mg imuran every day

First hepatologist started this therapy because he said that PSC in kids

follows an AIH pattern. Q's current hepatologist is not comfortable with it

but is leery about making sudden changes. Q had several problems with the

initial high-dose pred -- but has no noticeable side effects now. he weighs

about 50 lbs.

The current hep suggested methotrexate, - we haven't done it yet. Q was on

that for the first 6 months or so. It's been nearly 3 years now and my

memory is foggy, but I think it was discontinued because of the

developmental risks.

************************************************************

Peggy (wife, 54)

Phil - (56)UC for 30 years, PSC Dx'd 12/98. Working toward listing for

transplant.

Home: CA (Santa Clarita Valley, about 50 miles north of L.A.)

**********************************************************

Penny R Weller <weller@... - Diagnosed my PSC in Dec. 1996

********************************************************

:

Home: NH

***********************************************************

Teri- (32) PSC & UC( not Crohn's as once suspected)

Home: NC

One son w/ADD on ADDERAL 10mg only on school days.

***********************************************************

Dx'd PSC Sep 98. Probably had it 5 y's previous. 20 y.o.

First symptoms: fatigue, jaundiced eyes. Thought it was a flair up of

epsein-barre virus. Elevated liver enzymes. Symptoms now: loss of appetite,

nausea, fatigue, and URQ pain. Liver enzymes nearly normal now. Have

chronic inflammation of the liver, (Dr. attributes this to the activity in

the bile ducts), Scar tissue & lesions in bile ducts, ...and (I believe)

scar tissue on my

actual liver.

**************************************************************

Vicki: (38)

Dx PSC 6/99

Home: OH

*******

*******

Re: Stress---- Cause of Relapse?

> Might not work, but what in the world do we have to lose? Maybe

> generations to come will study PSC in the medical schools even then it may

> be very common. Who knows?

> Hugs,

> Biddy

[Guest guest]

Further instructions: If everybody who posts on this WHO'S WHO listing

would please delete all the " carats " each time they post, then they won't

accumulate. Just hit: delete, down arrow, delete, down arrow,...etc. It's

fast if you do it all at once and do it every time. Once they start

building up, the size of your individual window will alter where the carats

land, and make it more time consuming and difficult to delete them.

WHO'S WHO

*************************************************************************

Biddy (57) PSC

Home: WV

Dx'd PSC in 1996. Symptoms: Started w/URQ pain. Pain increased in

frequency from monthly to frequent. Red palms w/white center. Has

bleeding

ulcers, enlarged spleen, very enlarged liver but is now shrinking from

cirrhoses. Extremely sick at my stomach. Little appetite due to pain.

Ankles & feet beginning to swell.

1966 - had Scaroidosis

1987 - tremendous itching all over body w/no rash - Lasted about 2 to 3

months.

********************************************************************

cstaple-@...

Carol Staple:

Dx 9/89 PSC, UC (lifelong history)

Meds: Actigal

ERCP's (4 of them) all indicated inner & external bile ducts are affected.

Elevated LFT's

Had 3 balloon dilatations of the bile ducts.

********************************************************************

Charlotte Riggle (Charli):

Whose dad has PSC and whose sons have ADD and NVLD)

*************************************************************

Debbie Lynch: UC (1988), PSC (1989 with URQ pain present & bowel problems)

Home: Toronto, Ontario, Canada. 1999:

Meds: Urso, since 1989

Colonoscopy confirmed UC.

Crazy endless itching! Has had very little outward symptoms of PSC.

3 children, 8, 4 1/2, 6 weeks all born after diagnosis.

Early stage cirrhosis, esophageal varices, and splenomegaly, Not listed for

transplant.

***********************************************************

: Dx'd: 6/85; on TX. list at NEMC since 3/98;

Home: NH, Age 54

**********************************************************

Jacquelyn: is POST TX.

1999: Husband, 4, Calvin 2, Christian family.

***********************************************************

Jodi Rhoades (Mom), Married to 's father

: (9) PSC & ADD - used Ritalin

***********************************************************

Kathy (wife) & Jim:(56)

Dx 1991

Listed (transplant) June 1999

Hospital: Oregon Health Sciences University.

Meds: Actigal; Vitamin K & Fosamax-that's for low bone density -

indirectly

related to PSC)

Has also worked extensively with a naturopathic MD.

(His supplements include: Silymarin, (Milk Thistle - good studies on this

from OHSU); Vitamin C;

Calcium Magnesium, Vitamin E; Multiple Vitamin; Zinc). Through trial and

error he has discovered foods that 'irritate' his system (i.e., make him

itch). He agrees with the information provided in the book " Eat Right Four

Your Type " by Dr. J. D'Adamo. He has also found good information from

The American Liver Foundation. Whenever there has been a conference that

they have sponsored, Jim has ordered copies of tapes. They've had some good

info. A

very good personal PSC transplant site is:

http://ourworld.compuserve.com/homepages/drbingo/LIVER.

It's graphic, but excellent. There is also a good PBC site

- http://hometown.aol.com/pbcers.

********************************************************

Larry:

Home: MD

Liz: RN (Rnurse987@...)

BBNLU@...

************************************************************

Luanne - 16 year old son Ty, Dx'd at 10.

Ty also has Crohns Disease, Rheumatoid Arthritis, PSC & AIH.

Home: NJ

Hospital: Children's Hospital in Philadelphia PA.

Tyler takes many drugs for his diseases but is doing his best in years.

************************************************************

Marcy (mom)

, 12

Home: ME

************************************************************

Michele Bruno, PSC, NJ

***********************************************************

Pam (mom)

Quantell, 9, Dx 1996 @ 6 y.o.) Believes he had it for 2 years before

diagnosis.

Home: Chicago

Hospital: Children's Memorial

ADD (secondary to Fetal Alcohol Syndrome and Prenatal Drug Exposure) Never

used stimulants. Has had electrical shock therapy.

Meds: 10 mg prednisone every other day

25 mg imuran every day

First hepatologist started this therapy because he said that PSC in kids

follows an AIH pattern. Q's current hepatologist is not comfortable with it

but is leery about making sudden changes. Q had several problems with the

initial high-dose pred -- but has no noticeable side effects now. he weighs

about 50 lbs.

The current hep suggested methotrexate, - we haven't done it yet. Q was

on

that for the first 6 months or so. It's been nearly 3 years now and my

memory is foggy, but I think it was discontinued because of the

developmental risks.

************************************************************

Peggy (wife, 54)

Phil - (56)UC for 30 years, PSC Dx'd 12/98. Working toward listing for

transplant.

Home: CA (Santa Clarita Valley, about 50 miles north of L.A.)

**********************************************************

Penny R Weller <weller@... - Diagnosed my PSC in Dec. 1996

********************************************************

(38)(Mom) ADD

(7, male) PSC, ADHD

Dx'd: 8/99

Meds: Actigal (PSC), Wellbutrin & Clonadine (AD/HD)

Symptoms: None.

Elevated Liver Enzymes (350 - 400) found in baseline bloodwork done

for ADHD med.

Possible Factors: Electric shock when 6 months old, Medications for

ADHD(Dexedrine, stimulant), Parents did drugs in high school.

Test Results:

Ultra Sound - mild dilatation of extrahepatic commom bile duct. Hydrops

of the gallbladder, intraluminal tumefactive sludge.

Biopsi - Minimal " activity " so probably not AIH. Bile duct injury &

fibrosis (suggestive of bile duct obstruction of sclerosing cholangitis.)

Also, eosinophils - suggesting drug toxicity, but EFT persist even off ADHD

drugs.

ERCP - moderate irregularity of intrahepatic biliary tree, stricturs and

beading.

LFT returned to and remained normal after starting Actigal.

******************************************************

:

Home: NH

***********************************************************

Teri- (32) PSC & UC( not Crohn's as once suspected)

Home: NC

One son w/ADD on ADDERAL 10mg only on school days.

***********************************************************

Dx'd PSC Sep 98. Probably had it 5 y's previous. 20 y.o.

First symptoms: fatigue, jaundiced eyes. Thought it was a flair up of

epsein-barre virus. Elevated liver enzymes. Symptoms now: loss of

appetite,

nausea, fatigue, and URQ pain. Liver enzymes nearly normal now. Have

chronic inflammation of the liver, (Dr. attributes this to the activity in

the bile ducts), Scar tissue & lesions in bile ducts, ...and (I believe)

scar tissue on my

actual liver.

**************************************************************

Vicki: (38)

Dx PSC 6/99

Home: OH

*******

*******

[Guest guest]

,

Great idea!

Hugs,

Biddy

WHO's

WHO

>(don't change the subject, so that we can easily identify these postings)

>when we add our info, it should be easy enough to keep one current copy.

If

>I've edited anybody's words in my attempts to summarize your info, please

>feel free to change it if it no longer makes sense. Biddy, from this list,

>maybe you (or whomever) could edit a copy and re-post according to

symptoms,

>or whatever. What do you think?

>

>Hope this will be helpful. If you all think this is nuts and won't work, I

>promise not to be offended. Just say so!

>

>Hugs to all,

>

>*************************************************************************

>Biddy (57) PSC

>Home: WV

>Dx'd PSC in 1996. Symptoms: Started w/URQ pain. Pain increased in

>frequency from monthly to frequent. Red palms w/white center. Has

bleeding

>ulcers, enlarged spleen, very enlarged liver but is now shrinking from

>cirrhoses. Extremely sick at my stomach. Little appetite due to pain.

>Ankles & feet beginning to swell.

>1966 - had Scaroidosis

>1987 - tremendous itching all over body w/no rash - Lasted about 2 to 3

>months.

>********************************************************************

>cstaple-@...

>Carol Staple:

>Dx 9/89 PSC, UC (lifelong history)

>Meds: Actigal

>ERCP's (4 of them) all indicated inner & external bile ducts are affected.

>Elevated LFT's

>Had 3 balloon dilatations of the bile ducts.

>********************************************************************

>Charlotte Riggle (Charli):

>Whose dad has PSC and whose sons have ADD and NVLD)

>*************************************************************

>Debbie Lynch: UC (1988), PSC (1989 with URQ pain present & bowel problems)

>Home: Toronto, Ontario, Canada. 1999:

>Meds: Urso, since 1989

>Colonoscopy confirmed UC.

>Crazy endless itching! Has had very little outward symptoms of PSC.

>3 children, 8, 4 1/2, 6 weeks all born after diagnosis.

>Early stage cirrhosis, esophageal varices, and splenomegaly, Not listed for

>transplant.

>***********************************************************

>: Dx'd: 6/85; on TX. list at NEMC since 3/98;

>Home: NH, Age 54

>**********************************************************

>Jacquelyn: is POST TX.

>1999: Husband, 4, Calvin 2, Christian family.

>***********************************************************

>Jodi Rhoades (Mom), Married to 's father

>: (9) PSC & ADD - used Ritalin

>***********************************************************

>Kathy (wife) & Jim:(56)

>Dx 1991

>Listed (transplant) June 1999

>Hospital: Oregon Health Sciences University.

>Meds: Actigal; Vitamin K & Fosamax-that's for low bone density -

indirectly

>related to PSC)

>Has also worked extensively with a naturopathic MD.

>(His supplements include: Silymarin, (Milk Thistle - good studies on this

>from OHSU); Vitamin C;

>Calcium Magnesium, Vitamin E; Multiple Vitamin; Zinc). Through trial and

>error he has discovered foods that 'irritate' his system (i.e., make him

>itch). He agrees with the information provided in the book " Eat Right Four

>Your Type " by Dr. J. D'Adamo. He has also found good information from

>The American Liver Foundation. Whenever there has been a conference that

>they have sponsored, Jim has ordered copies of tapes. They've had some good

>info. A

>very good personal PSC transplant site is:

>http://ourworld.compuserve.com/homepages/drbingo/LIVER.

>It's graphic, but excellent. There is also a good PBC site

>- http://hometown.aol.com/pbcers.

>********************************************************

>Larry:

>Home: MD

>

>Liz: RN (Rnurse987@...)

>BBNLU@...

>************************************************************

>Luanne - 16 year old son Ty, Dx'd at 10.

>Ty also has Crohns Disease, Rheumatoid Arthritis, PSC & AIH.

>Home: NJ

>Hospital: Children's Hospital in Philadelphia PA.

>Tyler takes many drugs for his diseases but is doing his best in years.

>************************************************************

>Marcy (mom)

>, 12

>Home: ME

>************************************************************

>Michele Bruno, PSC, NJ

>***********************************************************

>Pam (mom)

>Quantell, 9, Dx 1996 @ 6 y.o.) Believes he had it for 2 years before

>diagnosis.

>Home: Chicago

>Hospital: Children's Memorial

>ADD (secondary to Fetal Alcohol Syndrome and Prenatal Drug Exposure) Never

>used stimulants. Has had electrical shock therapy.

>Meds: 10 mg prednisone every other day

> 25 mg imuran every day

>First hepatologist started this therapy because he said that PSC in kids

>follows an AIH pattern. Q's current hepatologist is not comfortable with it

>but is leery about making sudden changes. Q had several problems with the

>initial high-dose pred -- but has no noticeable side effects now. he weighs

>about 50 lbs.

>

>The current hep suggested methotrexate, - we haven't done it yet. Q was

on

>that for the first 6 months or so. It's been nearly 3 years now and my

>memory is foggy, but I think it was discontinued because of the

>developmental risks.

>************************************************************

>Peggy (wife, 54)

>Phil - (56)UC for 30 years, PSC Dx'd 12/98. Working toward listing for

>transplant.

>Home: CA (Santa Clarita Valley, about 50 miles north of L.A.)

>**********************************************************

>Penny R Weller <weller@... - Diagnosed my PSC in Dec. 1996

>********************************************************

>:

>Home: NH

>***********************************************************

>Teri- (32) PSC & UC( not Crohn's as once suspected)

>Home: NC

>One son w/ADD on ADDERAL 10mg only on school days.

>***********************************************************

>

>Dx'd PSC Sep 98. Probably had it 5 y's previous. 20 y.o.

>First symptoms: fatigue, jaundiced eyes. Thought it was a flair up of

>epsein-barre virus. Elevated liver enzymes. Symptoms now: loss of

appetite,

>nausea, fatigue, and URQ pain. Liver enzymes nearly normal now. Have

>chronic inflammation of the liver, (Dr. attributes this to the activity in

>the bile ducts), Scar tissue & lesions in bile ducts, ...and (I believe)

>scar tissue on my

>actual liver.

>**************************************************************

>Vicki: (38)

>Dx PSC 6/99

>Home: OH

>

>*******

>*******

> Re: Stress---- Cause of Relapse?

>

>

>> Might not work, but what in the world do we have to lose? Maybe

>> generations to come will study PSC in the medical schools even then it

may

>> be very common. Who knows?

>> Hugs,

>> Biddy

>

>

>

>------------------------------------------------------------------------

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

>

[Guest guest]

I didn't even know that there was a web site at /fly.to/pscs!

I had pointed out that the posts with the subject PSC Profile,

personal story or My Story were collected for 19 members as

links at the egroup site for .

For instance, Dianne Arneill - Castle Rock, CO reported her

story in post 489 and it is found at:

/group//489.html

The links page is at:

/docvault//Links

Tim

--- palfeld@... wrote:

> Dan mentioned that we can go into the member section and put

> our information in it. There are very few who have done it.

> If you go into members,myspace,user info and fill out the

> forms then go into the remarks area and type in your story.

> This is a good way we can tell new people how to find out

> about us without repeating the story over and over. You can

> look at Dan Bertles,

> Peggy Alfeld, or (Bill) Dolans as examples. They are

> really the only ones that gave a complete story. Also they

> can be

> pointed back to http://fly.to/pscs and read the stories for

> , Penny, Erwin, Dirk, Michele, Russ and Laurie.

>

> or athon, can we at least add Tim or one of the

> other post transplant people to that list?

>

> Also someone gave 's story as a short cut. Where did

> that come from?

> Peg (wife of Phil Alfeld 56, dx PSC 12/98, working toward

> listing)

__________________________________________________

[Guest guest]

Does anyone know how to link some of the other stories to the links - it's a

great way to read them.

Peg

Romlein wrote:

> I didn't even know that there was a web site at /fly.to/pscs!

>

> I had pointed out that the posts with the subject PSC Profile,

> personal story or My Story were collected for 19 members as

> links at the egroup site for .

> For instance, Dianne Arneill - Castle Rock, CO reported her

> story in post 489 and it is found at:

> /group//489.html

> The links page is at:

> /docvault//Links

>

> Tim

>

> --- palfeld@... wrote:

> > Dan mentioned that we can go into the member section and put

> > our information in it. There are very few who have done it.

> > If you go into members,myspace,user info and fill out the

> > forms then go into the remarks area and type in your story.

> > This is a good way we can tell new people how to find out

> > about us without repeating the story over and over. You can

> > look at Dan Bertles,

> > Peggy Alfeld, or (Bill) Dolans as examples. They are

> > really the only ones that gave a complete story. Also they

> > can be

> > pointed back to http://fly.to/pscs and read the stories for

> > , Penny, Erwin, Dirk, Michele, Russ and Laurie.

> >

> > or athon, can we at least add Tim or one of the

> > other post transplant people to that list?

> >

> > Also someone gave 's story as a short cut. Where did

> > that come from?

> > Peg (wife of Phil Alfeld 56, dx PSC 12/98, working toward

> > listing)

>

> __________________________________________________

>

[Guest guest]

Re: WHO's WHO

Further instructions: If everybody who posts on this WHO'S WHO listing

would please delete all the " carats " each time they post, then they won't

accumulate. Just hit: delete, down arrow, delete, down arrow,...etc. It's

fast if you do it all at once and do it every time. Once they start

building up, the size of your individual window will alter where the carats

land, and make it more time consuming and difficult to delete them.

WHO'S WHO

*************************************************************************

Biddy (57) PSC

Home: WV

Dx'd PSC in 1996. Symptoms: Started w/URQ pain. Pain increased in

frequency from monthly to frequent. Red palms w/white center. Has bleeding

ulcers, enlarged spleen, very enlarged liver but is now shrinking from

cirrhoses. Extremely sick at my stomach. Little appetite due to pain.

Ankles & feet beginning to swell. 1966 - had Scaroidosis 1987 - tremendous

itching all over body w/no rash - Lasted about 2 to 3 months.

********************************************************************

cstaple-@...

Carol Staple:

Dx 9/89 PSC, UC (lifelong history)

Meds: Actigal

ERCP's (4 of them) all indicated inner & external bile ducts are affected.

Elevated LFT's

Had 3 balloon dilatations of the bile ducts.

********************************************************************

Charlotte Riggle (Charli):

Whose dad has PSC and whose sons have ADD and NVLD)

*************************************************************

Debbie Lynch: UC (1988), PSC (1989 with URQ pain present & bowel

problems)

Home: Toronto, Ontario, Canada. 1999:

Meds: Urso, since 1989

Colonoscopy confirmed UC.

Crazy endless itching! Has had very little outward symptoms of PSC.

3 children, 8, 4 1/2, 6 weeks all born after diagnosis.

Early stage cirrhosis, esophageal varices, and splenomegaly, Not listed

for transplant.

***********************************************************

: Dx'd: 6/85; on TX. list at NEMC since 3/98;

Home: NH, Age 54

**********************************************************

Jacquelyn: is POST TX.

1999: Husband, 4, Calvin 2, Christian family.

***********************************************************

Jodi Rhoades (Mom), Married to 's father

: (9) PSC & ADD - used Ritalin

***********************************************************

Kathy (wife) & Jim:(56)

Dx 1991

Listed (transplant) June 1999

Hospital: Oregon Health Sciences University.

Meds: Actigal; Vitamin K & Fosamax-that's for low bone density -

indirectly related to PSC)

Has also worked extensively with a naturopathic MD.

(His supplements include: Silymarin, (Milk Thistle - good studies on this

from OHSU); Vitamin C; Calcium Magnesium, Vitamin E; Multiple Vitamin;

Zinc). Through trial and error he has discovered foods that 'irritate' his

system (i.e., make him itch). He agrees with the information provided in

the book " Eat Right Four Your Type " by Dr. J. D'Adamo. He has also

found good information from

The American Liver Foundation. Whenever there has been a conference that

they have sponsored, Jim has ordered copies of tapes. They've had some good

info. A very good personal PSC transplant site :

http://ourworld.compuserve.com/homepages/drbingo/LIVER.

It's graphic, but excellent. There is also a good PBC site

- http://hometown.aol.com/pbcers.

********************************************************

Larry:

Home: MD

Liz: RN (Rnurse987@...)

BBNLU@...

************************************************************

Luanne - 16 year old son Ty, Dx'd at 10.

Ty also has Crohns Disease, Rheumatoid Arthritis, PSC & AIH.

Home: NJ

Hospital: Children's Hospital in Philadelphia PA.

Tyler takes many drugs for his diseases but is doing his best in years.

************************************************************

Marcy (mom)

, 12

Home: ME

October '98

Started presenting URQ pain and tenderness. Rapid onset of fever chills and

severe pain and jaundice. Utrasound and ex-ray for " hot " appendix showed

nothing. Bloodwork showed critical level LFT's. Had multiple Dr visit with

various GI's and finally got to Boston Children's Hospital in February '99

for repeat Liver Biopsy(Portland " lost " the first set of slides) and ERCP.

All tests came back definitive for PSC.Placed on Actigall 300mg BID

Had few symptoms other than elevated LFT tests and some URQ pain, headache

and spiking fevers that spontaneously disappeared.

September '99

Sudden onset of nausea, vomiting,severe headache and fever,DX was severe

bacterial Choloangitis. IV antibiotics and continue Actigall.

also loses weight very easily due to the PSC and appetite not always

being good.

In active stage of PSC and progressing rapidly for now.

************************************************************

Michele Bruno, PSC, NJ

***********************************************************

Pam (mom)

Quantell, 9, Dx 1996 @ 6 y.o.) Believes he had it for 2 years before

diagnosis.

Home: Chicago

Hospital: Children's Memorial

ADD (secondary to Fetal Alcohol Syndrome and Prenatal Drug Exposure) Never

used stimulants. Has had electrical shock therapy.

Meds: 10 mg prednisone every other day

25 mg imuran every day

First hepatologist started this therapy because he said that PSC in kids

follows an AIH pattern. Q's current hepatologist is not comfortable with it

but is leery about making sudden changes. Q had several problems with the

initial high-dose pred -- but has no noticeable side effects now. he weighs

about 50 lbs.

The current hep suggested methotrexate, - we haven't done it yet. was on

that for the first 6 months or so. It's been nearly 3 years now and my

memory is foggy, but I think it was discontinued because of the

developmental risks.

************************************************************

Peggy (wife, 54)

Phil - (56)UC for 30 years, PSC Dx'd 12/98. Working toward listing for

transplant. Home: CA (Santa Clarita Valley, about 50 miles north of L.A.)

**********************************************************

Penny R Weller <weller@... - Diagnosed my PSC in Dec. 1996

********************************************************

(38)(Mom) ADD

(7, male) PSC, ADHD

Dx'd: 8/99

Meds: Actigal (PSC), Wellbutrin & Clonadine (AD/HD)

Symptoms: None.

Elevated Liver Enzymes (350 - 400) found in baseline bloodwork done for

ADHD med.

Possible Factors: Electric shock when 6 months old, Medications for

ADHD(Dexedrine, stimulant), Parents did drugs in high school.

Test Results:

Ultra Sound - mild dilatation of extrahepatic commom bile duct. Hydrops

of the gallbladder, intraluminal tumefactive sludge.

Biopsi - Minimal " activity " so probably not AIH. Bile duct injury &

fibrosis (suggestive of bile duct obstruction of sclerosing cholangitis.)

Also, eosinophils - suggesting drug toxicity, but EFT persist even off ADHD

drugs.

ERCP - moderate irregularity of intrahepatic biliary tree, stricturs and

beading.

LFT returned to and remained normal after starting Actigal.

******************************************************

:

Home: NH

***********************************************************

Teri- (32) PSC & UC( not Crohn's as once suspected)

Home: NC

One son w/ADD on ADDERAL 10mg only on school days.

***********************************************************

Dx'd PSC Sep 98. Probably had it 5 y's previous. 20 y.o.

First symptoms: fatigue, jaundiced eyes. Thought it was a flair up of

epsein-barre virus. Elevated liver enzymes. Symptoms now: loss of

appetite, nausea, fatigue, and URQ pain. Liver enzymes nearly normal now.

Have chronic inflammation of the liver, (Dr. attributes this to the

activity in the bile ducts), Scar tissue & lesions in bile ducts, ...and (I

believe) scar tissue on my actual liver.

**************************************************************

Vicki: (38)

Dx PSC 6/99

Home: OH

******* *******

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[Guest guest]

Dan,

I checked out the link you gave previously and it took me to 's story,

just like you said it would. But then I found myself wading aimlessly

through every piece of mail ever posted on the List. (And I read 64 out of

4000 some before I had to retire for the evening.) Are the " stories "

supposed to be all lumped together? I side track easily...maybe I got off

on the wrong link or something.

I still find myself referring back to my " Friends " report of Who's Who every

time I'm online with this group. I continually add and edit to update

it....maybe just the re-typing of the info helps me to process the info into

a compartment where I can recall it. If anybody else wants me to repost my

list of Who's Who, you'll need to holler. Otherwise I'll assume you've

found the " stories " link or are doing fine with whatever details you have.

Oh, and I don't have much of a story to post, but for those who joined after

you all posted your stories, is there instructions somewhere for newcomers

to post their stories?

Re: WHO's WHO

> Don't know if you all know this or not, but there is a place on the

e-groups

> web site for personal history/info. This would be a great place for each

of

> us to put our information for group members to see. It would

significantly

> ease the process of getting to know each other.

>

> Dan

>

[Guest guest]

,

On the top of the screen click on the word " Members. " This will bring you

into the list of members. Click on each e-mail address to get info on the

members. Don't know how many people have updated their profiles, but it is

a great place to do that.

Dan

> Re: WHO's WHO

>

> Dan,

>

> I checked out the link you gave previously and it took me to 's

> story,

> just like you said it would. But then I found myself wading aimlessly

> through every piece of mail ever posted on the List. (And I read 64 out

> of

> 4000 some before I had to retire for the evening.) Are the " stories "

> supposed to be all lumped together? I side track easily...maybe I got off

> on the wrong link or something.

>

> I still find myself referring back to my " Friends " report of Who's Who

> every

> time I'm online with this group. I continually add and edit to update

> it....maybe just the re-typing of the info helps me to process the info

> into

> a compartment where I can recall it. If anybody else wants me to repost

> my

> list of Who's Who, you'll need to holler. Otherwise I'll assume you've

> found the " stories " link or are doing fine with whatever details you have.

>

> Oh, and I don't have much of a story to post, but for those who joined

> after

> you all posted your stories, is there instructions somewhere for newcomers

> to post their stories?

>

>

>

> Re: WHO's WHO

>

>

> > Don't know if you all know this or not, but there is a place on the

> e-groups

> > web site for personal history/info. This would be a great place for

> each

> of

> > us to put our information for group members to see. It would

> significantly

> > ease the process of getting to know each other.

> >

> > Dan

> >

>

>

>

> ------------------------------------------------------------------------

>

> eGroups.com home: /group/

> - Simplifying group communications

>

>

>

[Guest guest]

,

Would you please send your Who's Who to me? Either I have forgotten

about it (BRAIN FOG - getting worse and worse) or lost it. Maybe this is the

same thing I am trying to do -- but I am so very slow at it.

I asked my friends on this site to share their symptoms with us or

anything (no matter how significant or insignificant) else. I am trying to

get a list together of all of our symptoms, what disease we may have had

long ago, etc., etc. I intend to send this to the AMA so maybe, just maybe

the " liver docs " will be interested enough to get a handle on this

disease -- or at least start in-depth research.

Hugs,

Biddy

EX: Years ago I was dx with Scarcoidosis in 1966; Please, please pardon me I

just cannot remember the others right now. This brain thing takes so much

out of me when I just cannot remember.

Re: WHO's WHO

>Dan,

>

>I checked out the link you gave previously and it took me to 's

story,

>just like you said it would. But then I found myself wading aimlessly

>through every piece of mail ever posted on the List. (And I read 64 out of

>4000 some before I had to retire for the evening.) Are the " stories "

>supposed to be all lumped together? I side track easily...maybe I got off

>on the wrong link or something.

>

>I still find myself referring back to my " Friends " report of Who's Who

every

>time I'm online with this group. I continually add and edit to update

>it....maybe just the re-typing of the info helps me to process the info

into

>a compartment where I can recall it. If anybody else wants me to repost my

>list of Who's Who, you'll need to holler. Otherwise I'll assume you've

>found the " stories " link or are doing fine with whatever details you have.

>

>Oh, and I don't have much of a story to post, but for those who joined

after

>you all posted your stories, is there instructions somewhere for newcomers

>to post their stories?

>

>

>

> Re: WHO's WHO

>

>

>> Don't know if you all know this or not, but there is a place on the

>e-groups

>> web site for personal history/info. This would be a great place for each

>of

>> us to put our information for group members to see. It would

>significantly

>> ease the process of getting to know each other.

>>

>> Dan

>>

>

>

>

>------------------------------------------------------------------------

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

>