Biddy's Poll

[Guest guest]

" .....Why doesn't each of us post what our symptoms were when we first was

diagnosed, symptoms before we were diagnosed, did any of us have an " odd "

disease or thing that happened -- maybe years ago -- that we didn't pay any

attention to..... "

Biddy,

I've been wanting to respond to this, but I just don't seem to have the time

on-line anymore since school started. Anyway, I don't think we'd be very

helpful since we're so new to this but here goes:

Abdominal pain and fatigue summer 96

Elevated LFT's

Biopsy and ERCP - showed no PSC yet

Confusion and problems in school - spring 97

Biopsy summer 97

Put on Actigall, Lactulose and Vitamin E

LFT's back to normal

Biopsy and ERCP and colonoscopy summer 99 - DX PSC

The only interesting aspect that I can think of that's maybe/probably a

factor in his liver deterioration is the fact that in the summer of 96 when

they were doing the initial testing, he tested positive for CMV (a common

virus that affects everyone differently and many people carry it without

even knowing-but it can be detrimental to an unborn child, if the mother

carries it while pregnant)

,

He has never had any electrical shock nor has he been on any stimulants (not

until after he began having liver problems.) Hope this helps.

Jodi Rhoades, 's Mom

(age 9 - diagnosed with PSC 6-99)

" For surely I know the plans I have for you, says the Lord, plans for your

welfare and not for harm, to give you a future with hope. " 29:11

______________________________________________________

[Guest guest]

Jodi!

First of all any info will be very helpful. If several of us has the

same symptoms that will help a lot.

Your posting on the virus is very interesting. So far, I have had no one

to respond to this one.

But, as I said, all of the symptoms will be so very helpful. I am taking

the responses I get and putting them into categories to see how many of us

has the same symptoms and how many have different symptoms.

I may be wrong, but I think this will be very helpful to the medical

community. I know that they have diagnosed us and given us symptoms to look

for, but I think that our info -- actual people with PSC -- will get their

attention, or I hope so. To me it is worth a try.

Thank you for your help as always.

Hugs,

Biddy

Re: Biddy's poll

>

>

>

> " .....Why doesn't each of us post what our symptoms were when we first was

>diagnosed, symptoms before we were diagnosed, did any of us have an " odd "

>disease or thing that happened -- maybe years ago -- that we didn't pay any

>attention to..... "

>

>

>Biddy,

>I've been wanting to respond to this, but I just don't seem to have the

time

>on-line anymore since school started. Anyway, I don't think we'd be very

>helpful since we're so new to this but here goes:

>

>

>Abdominal pain and fatigue summer 96

>Elevated LFT's

>Biopsy and ERCP - showed no PSC yet

>Confusion and problems in school - spring 97

>Biopsy summer 97

>Put on Actigall, Lactulose and Vitamin E

>LFT's back to normal

>Biopsy and ERCP and colonoscopy summer 99 - DX PSC

>

>The only interesting aspect that I can think of that's maybe/probably a

>factor in his liver deterioration is the fact that in the summer of 96 when

>they were doing the initial testing, he tested positive for CMV (a common

>virus that affects everyone differently and many people carry it without

>even knowing-but it can be detrimental to an unborn child, if the mother

>carries it while pregnant)

>

>,

>He has never had any electrical shock nor has he been on any stimulants

(not

>until after he began having liver problems.) Hope this helps.

>

>Jodi Rhoades, 's Mom

> (age 9 - diagnosed with PSC 6-99)

>

> " For surely I know the plans I have for you, says the Lord, plans for your

>welfare and not for harm, to give you a future with hope. " 29:11

>

>

>

>______________________________________________________

>

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>

[Guest guest]

Biddy,

I don't know if this is what you meant about giving information. I hope this

isn't to lengthy. But here it is.

Approximately 12 yrs. ago (1987) I started having UPQP and attacks, often

going to the ER in extreme pain. Doctor after doctor said " that they could

find nothing wrong with me. " I went to several surgeons over the years and

test after test showed nothing wrong. I had doctors asking me if " everything

was OK at home " ? They thought is was in my head - I know it was in my side!

Seven years into this, a surgeon that I had seen previously, did another test

on me and said that the bile was not pumping out of my gallbladder as it

should, that they did not usually do surgery for this but since I had so many

problems for so long, he would do the surgery. After the surgery I was told

that there were innumerable gallstones in my gallbladder. I had no problems,

for years I felt better. Then about 6 months ago I started telling my husband

that it felt like I had my gallbladder. Then in May of 99 I was hospitalized

with chest pain and severe fatigue. I could not walk two doors down I was SO

tired and I felt very bloated. Always felt full, no appetite and nausea. I

also had started to have bouts of diarrhea especially after I ate anything.

This would go on for about a week every three weeks. While in the hospital I

complained about the URQP and was told " that wouldn't have anything to do

with your heart. " I went home the second trip from the hospital after having

a Heart Catherization! That was normal. After being home for a few days I

was still extremely fatigued. I started to itch and attributed it to a new

medicine I had been put on for asthma. The itching didn't stop but got worse.

I started to jaundice on my face and then my eyes, my urine was brown. I had

been running low grade temps, had URQP and was nauseated. I went to the ER

feeling awful. They told me my sugar was high and to see my doctor in the

morning. They said I did not look jaundiced. After my doctor saw my urine, I

was seen immediately, and she said right away, " You are jaundiced! " I was

sent for an ultragram of my liver and pancreas and it came back normal, and

blood work which came back with very elevated LFTs I was sent for a cat scan

and to a GI. The scan again was normal so the GI set up for me to have an

ERCP, he " was sure " I had a stone. My blood work was looking better even

before I had the ERCP. During the ERCP my common bile duct was clipped to

release what the doctor said was " a ton " of bile. I was diagnosed at that

time with PSC.

He said he was 95% sure this is what I have, that I would someday have to

have a liver transplant, and that I should loose weight, that my life

depended upon it when it comes time for the transplant. I was put on Actigall

but I was so nauseated that I asked to go off of it, the doctor said he

didn't think that was causing it but because my blood work looked so good I

could. I am not on it now.

My blood work has looked good since the ERCP. I live with URQP, an almost

constant nagging pain, and occasional severe pain. I also deal with diarrhea,

nausea and fatigue. I break out in a cold sweat and get chills on occasion

and run low grade temperatures sometimes. I have also had a colonoscopy and

it was negative for UC. Do you think that the " gallbladder " problems I had

in the beginning were really the beginnings of PSC?

I have had asthma since age 12, off and on medicine for this over the years.

Only use inhailer as neeeded now. I was diagnosed with sleep apnea 1 1/2

years ago. No meds for this but I sleep with a C-pap so that I don't stop

breathing.

Surgeries: Sinus -3

ganglion on foot

gallbladder

laperoscopy (sp.) (exploratory, female)

Vicki 38 dx PSC 6/99 Ohio

[Guest guest]

Biddy,

I don't know if this is what you meant about giving information. I hope this

isn't to lengthy. But here it is.

Approximately 12 yrs. ago (1987) I started having UPQP and attacks, often

going to the ER in extreme pain. Doctor after doctor said " that they could

find nothing wrong with me. " I went to several surgeons over the years and

test after test showed nothing wrong. I had doctors asking me if " everything

was OK at home " ? They thought is was in my head - I know it was in my side!

Seven years into this, a surgeon that I had seen previously, did another test

on me and said that the bile was not pumping out of my gallbladder as it

should, that they did not usually do surgery for this but since I had so many

problems for so long, he would do the surgery. After the surgery I was told

that there were innumerable gallstones in my gallbladder. I had no problems,

for years I felt better. Then about 6 months ago I started telling my husband

that it felt like I had my gallbladder. Then in May of 99 I was hospitalized

with chest pain and severe fatigue. I could not walk two doors down I was SO

tired and I felt very bloated. Always felt full, no appetite. I also had

started to have bouts of diarrhea especially after I ate anything. This would

go on for about a week every three weeks. While in the hospital I complained

about the URQP and was told " that wouldn't have anything to do with your

heart. " I went home the second trip from the hospital after having a Heart

Catherization! That was normal. After being home for a few days I was still

extremely fatigued. I started to itch and attributed it to a new medicine I

had been put on for asthma. The itching didn't stop but got worse. I started

to jaundice on my face and then my eyes, my urine was brown. I had been

running low grade temps, had URQP and was nauseated. I went to the ER feeling

awful. They told me my sugar was high and to see my doctor in the morning.

They said I did not look jaundiced. After my doctor saw my urine, I was seen

immediately, and she said right away, " You are jaundiced! " I was sent for an

ultragram of my liver and pancreas and it came back normal, and blood work

which came back with very elevated LFTs I was sent for a cat scan and to a

GI. The scan again was normal so the GI set up for me to have an ERCP, he

" was sure " I had a stone. My blood work was looking better even before I had

the ERCP. During the ERCP my common bile duct was clipped to release what the

doctor said was " a ton " of bile. I was diagnosed with PSC.

He said he was 95% sure this is what I have, that I would someday have to

have a liver transplant, and that I should loose weight, that my life

depended upon it when it comes time for the transplant. I was put on Actigall

but I was so nauseated that I asked to go off of it, the doctor said he

didn't think that was causing it but because my blood work looked so good I

could. I am not on it now.

My blood work has looked good since the ERCP. I live with URQP, an almost

constant nagging pain, and occasional severe pain. I also deal with diarrhea,

nausea and fatigue. I break out in a cold sweat and get chills on occasion

and run low grade temperatures sometimes. I have also had a colonoscopy and

it was negative for UC. Do you think that the " gallbladder " problem I had in

the beginning were really the beginnings of PSC?

I have asthma

I have sleep apnea

Surgeries: Sinus -3

ganglion on foot

gallbladder

laperoscopy (exploratory, female)

[Guest guest]

Hi Larry!

I haven't had anyone else saying that they had been around harmful

chemicals but yourself and me.

You started with a fever and then your Bilirubun was slightly elevated.

What else occurred at the beginning just before being diagnosed? What

symptoms have you had since the diagnosis?

Another thing we have in common is that we were diagnosed the same year.

Hugs,

Biddy

Biddy's Poll

>Biddy,

>

>I work for the federal government at Ft. Meade, Md. From 1974 til 1981 I

>worked with communciations equipment, teletypewriters. When I would have to

>go out and do preventative maintenance on the equipment, to clean off all

the

>excess oil and grease and paper. I would vacuum all the paper out and then

>use Spray Nine, an industrial cleaner to get up some of the oil but then I

>would have to use a spray cleaner that had carbotetrachloride (sp) in it. I

>would spray it on and then vacuum it up. I never got sick from it, it just

>smelled bad.

>

>Also during that time we moved into a fixer upper house. It needed lots of

>work. Once I finally got to the basement to work on it I pulled the old

>paneling off to find a chalky substance on the walls. The old paint was

>oxidizing. Not knowing that this was a lead based paint at the time, I

>started to brush in off the walls and vacuum it up without the benefit of a

>face mask. The very next day I came down with a fever. I was off work for a

>week. The Drs. couldn't find anything and the fever didn't respond to

aspirin

>or whatever they gave me at the time. I felt very weak and got dizzy real

>easy. I didn't have any nausea though. From that point I started to lose

>weight. I lost a total of about 15 lb. I ate whatever I wanted and couldn't

>gain any weight.( I wish I could do that now ). I felt fine but looked

>skinny. I did eventually start gaining weight back. Can't pinpoint how long

>it took. Probably about a year at least.

>

>Eventually I was told that my bilirubin was a little elevated but I didn't

>look jaundiced. The Drs. told me I had Gilbert's syndrome, an ancestral

>related condition usually found in people with a Mediterranean background.

>

>I do believe that the times I was using the chemicals at work and the

>incident with the house is part of my problem. I don't know if anyone else

>has had some type of incident that parallels this or not. I hope this

helps.

>

>Larry UC-95 PSC-96 land

>

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[Guest guest]

Biddy,

Phil manufactured safes and they sprayed paint and I don't know whatever else

they may have used. He had the business for over ten years. He's been out of

it for 2. He's most likely had PSC for at least 10 or 12 years.

Peg

Biddy Santon wrote:

> Hi Larry!

> I haven't had anyone else saying that they had been around harmful

> chemicals but yourself and me.

> You started with a fever and then your Bilirubun was slightly elevated.

> What else occurred at the beginning just before being diagnosed? What

> symptoms have you had since the diagnosis?

> Another thing we have in common is that we were diagnosed the same year.

> Hugs,

> Biddy

> Biddy's Poll

>

> >Biddy,

> >

> >I work for the federal government at Ft. Meade, Md. From 1974 til 1981 I

> >worked with communciations equipment, teletypewriters. When I would have to

> >go out and do preventative maintenance on the equipment, to clean off all

> the

> >excess oil and grease and paper. I would vacuum all the paper out and then

> >use Spray Nine, an industrial cleaner to get up some of the oil but then I

> >would have to use a spray cleaner that had carbotetrachloride (sp) in it. I

> >would spray it on and then vacuum it up. I never got sick from it, it just

> >smelled bad.

> >

> >Also during that time we moved into a fixer upper house. It needed lots of

> >work. Once I finally got to the basement to work on it I pulled the old

> >paneling off to find a chalky substance on the walls. The old paint was

> >oxidizing. Not knowing that this was a lead based paint at the time, I

> >started to brush in off the walls and vacuum it up without the benefit of a

> >face mask. The very next day I came down with a fever. I was off work for a

> >week. The Drs. couldn't find anything and the fever didn't respond to

> aspirin

> >or whatever they gave me at the time. I felt very weak and got dizzy real

> >easy. I didn't have any nausea though. From that point I started to lose

> >weight. I lost a total of about 15 lb. I ate whatever I wanted and couldn't

> >gain any weight.( I wish I could do that now ). I felt fine but looked

> >skinny. I did eventually start gaining weight back. Can't pinpoint how long

> >it took. Probably about a year at least.

> >

> >Eventually I was told that my bilirubin was a little elevated but I didn't

> >look jaundiced. The Drs. told me I had Gilbert's syndrome, an ancestral

> >related condition usually found in people with a Mediterranean background.

> >

> >I do believe that the times I was using the chemicals at work and the

> >incident with the house is part of my problem. I don't know if anyone else

> >has had some type of incident that parallels this or not. I hope this

> helps.

> >

> >Larry UC-95 PSC-96 land

> >

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[Guest guest]

Biddy,

Did you get my answer to your poll? I was hospitalized due to pesticide

exposure.

Peg also mentioned the chemicals her husband was exposed to during the time he

was working with safes.

Biddy Santon wrote:

> Hi Larry!

> I haven't had anyone else saying that they had been around harmful

> chemicals but yourself and me.

> You started with a fever and then your Bilirubun was slightly elevated.

> What else occurred at the beginning just before being diagnosed? What

> symptoms have you had since the diagnosis?

> Another thing we have in common is that we were diagnosed the same year.

> Hugs,

> Biddy

> Biddy's Poll

>

> >Biddy,

> >

> >I work for the federal government at Ft. Meade, Md. From 1974 til 1981 I

> >worked with communciations equipment, teletypewriters. When I would have to

> >go out and do preventative maintenance on the equipment, to clean off all

> the

> >excess oil and grease and paper. I would vacuum all the paper out and then

> >use Spray Nine, an industrial cleaner to get up some of the oil but then I

> >would have to use a spray cleaner that had carbotetrachloride (sp) in it. I

> >would spray it on and then vacuum it up. I never got sick from it, it just

> >smelled bad.

> >

> >Also during that time we moved into a fixer upper house. It needed lots of

> >work. Once I finally got to the basement to work on it I pulled the old

> >paneling off to find a chalky substance on the walls. The old paint was

> >oxidizing. Not knowing that this was a lead based paint at the time, I

> >started to brush in off the walls and vacuum it up without the benefit of a

> >face mask. The very next day I came down with a fever. I was off work for a

> >week. The Drs. couldn't find anything and the fever didn't respond to

> aspirin

> >or whatever they gave me at the time. I felt very weak and got dizzy real

> >easy. I didn't have any nausea though. From that point I started to lose

> >weight. I lost a total of about 15 lb. I ate whatever I wanted and couldn't

> >gain any weight.( I wish I could do that now ). I felt fine but looked

> >skinny. I did eventually start gaining weight back. Can't pinpoint how long

> >it took. Probably about a year at least.

> >

> >Eventually I was told that my bilirubin was a little elevated but I didn't

> >look jaundiced. The Drs. told me I had Gilbert's syndrome, an ancestral

> >related condition usually found in people with a Mediterranean background.

> >

> >I do believe that the times I was using the chemicals at work and the

> >incident with the house is part of my problem. I don't know if anyone else

> >has had some type of incident that parallels this or not. I hope this

> helps.

> >

> >Larry UC-95 PSC-96 land

> >

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> >

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[Guest guest]

Biddy,

I was dx with UC first. I had diarrhea for about 6 months. The Dr. finally

sent me to the GI and he did a colonoscopy to verify the UC. That was in Oct.

of 95. I had just gone thru a year of knowing that my mother was going to die

of lung cancer. It was also a very, very stressful time at work on top of

that. She died in Dec. of 95.

I was put on Asacol and it took care of the diarrhea from the UC. In Jan. 96

I had to go back for another blood test. That is when they discovered the

high LFTs. The GI sent me to a liver specialist at s Hopkins, who is now

retired, so I have to get used to another one. He did an ERCP and verified

that I had PSC. Didn't know what it was, never heard of it. He scared us to

death after telling us that I'll need a new liver in about 6-10 years. We

went to the library to get as much info on it as possible. That scared us

even more. The data we found was about 10-15 years old and gave PSC sufferers

only about 2 years to live. was very upset.

We did more investigations and the picture got a little better. At some point

I got connected with Gracie and Ed online. I think it was with the CCFA,

Chrons, Colitis Foundation of America. We used to post messages on their

website. By the way, in case those with UC have never checked it out, they

have a pretty good site. Gracie eventually told me about this support group

and I haven't looked back since. All of you have been a blessing to me. I

have learned so much from reading all the post and exchanging information.

When I read about all the problems that everyone else is having with their

PSC and especially the little ones that have PSC, UC or any other problems, I

know that I don't have any problems compared to others.

I just want everyone to know that I pray for all of you. OK, I have to go to

work now.

Larry UC-95 PSC-96

[Guest guest]

Thought I'd put in my two cents about exposure to chemicals.

For several years before I was diagnosed, I worked with quite a few

chemicals in the printing industry, usually with little or no safeguards

to exposure. I was in high school, and didn't know the things could be

dangerous.. just trusted the people who taught me how to use them.

Never had a bad reaction to them (or at least none that I could trace to

them).

The other thing that I suspect may have had something to do with

triggering the PSC, is that during the summer after my freshamn year of

college I spent a week or so working very hard, with only about an

average of 2 or 3 hours of sleep a night for the whole time. During

that week I also lost about 10 or 15 pounds. It was a few months after

that that I had the first symptoms I can now positively identify as

being caused by PSC.

I really have no idea whether either of these have anything to do with

it... I know plenty of people (my brother for one) who have done similar

things and never ended up with PSC.

athn

Biddy Santon wrote:

>

> Hi Larry!

> I haven't had anyone else saying that they had been around harmful

> chemicals but yourself and me.

> You started with a fever and then your Bilirubun was slightly elevated.

> What else occurred at the beginning just before being diagnosed? What

> symptoms have you had since the diagnosis?

> Another thing we have in common is that we were diagnosed the same year.

> Hugs,

> Biddy

> Biddy's Poll

>

> >Biddy,

> >

> >I work for the federal government at Ft. Meade, Md. From 1974 til 1981 I

> >worked with communciations equipment, teletypewriters. When I would have to

> >go out and do preventative maintenance on the equipment, to clean off all

> the

> >excess oil and grease and paper. I would vacuum all the paper out and then

> >use Spray Nine, an industrial cleaner to get up some of the oil but then I

> >would have to use a spray cleaner that had carbotetrachloride (sp) in it. I

> >would spray it on and then vacuum it up. I never got sick from it, it just

> >smelled bad.

> >

> >Also during that time we moved into a fixer upper house. It needed lots of

> >work. Once I finally got to the basement to work on it I pulled the old

> >paneling off to find a chalky substance on the walls. The old paint was

> >oxidizing. Not knowing that this was a lead based paint at the time, I

> >started to brush in off the walls and vacuum it up without the benefit of a

> >face mask. The very next day I came down with a fever. I was off work for a

> >week. The Drs. couldn't find anything and the fever didn't respond to

> aspirin

> >or whatever they gave me at the time. I felt very weak and got dizzy real

> >easy. I didn't have any nausea though. From that point I started to lose

> >weight. I lost a total of about 15 lb. I ate whatever I wanted and couldn't

> >gain any weight.( I wish I could do that now ). I felt fine but looked

> >skinny. I did eventually start gaining weight back. Can't pinpoint how long

> >it took. Probably about a year at least.

> >

> >Eventually I was told that my bilirubin was a little elevated but I didn't

> >look jaundiced. The Drs. told me I had Gilbert's syndrome, an ancestral

> >related condition usually found in people with a Mediterranean background.

> >

> >I do believe that the times I was using the chemicals at work and the

> >incident with the house is part of my problem. I don't know if anyone else

> >has had some type of incident that parallels this or not. I hope this

> helps.

> >

> >Larry UC-95 PSC-96 land

> >

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

> >MyPoints-Free Rewards When You're Online.

> >Start with up to 150 Points for joining!

> >http://clickhere./click/805

> >

> >

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> > - Simplifying group communications

> >

> >

> >

> >

> >

>

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> [Onvia.com. Work. Wisely.]

>

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[Guest guest]

I forgot to tell you that Mike has had some shaking in his right hand . From

time to time its very noticeable. He had rashes around his ankles for about

a year prior to diagnosis. Lynn

[Guest guest]

Hi!

Thanks for yet another clue to the mystery of PSC!

Come to think of it, I have had high cholestrol for over 10 years! Ummm.

Hugs,

Biddy

Biddy's poll

>I had no clue that I had anything wrong until my cholesterol spiked. I

>insisted my doctor check out the reason for the upswing (182 to 242 in a

>year) and we discovered stones in my gallbladder and common duct. PSC

>was discovered during an ERCP to remove stones from the duct prior to a

>lap choly. Talk about clueless....

>Penny

>

>

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[Guest guest]

Hi Lynn:

When I had those black, tarry stools I was told to be in Dayton, Ohio,

immediately.

My husband and I drove up there after he got off from work and a

meeting -- arriving at 1:30 a.m.

The next day the doc did an E?? -- can't remember to save my life what

the initials were -- but there were only 3 initials -- hope someone will

e-mail and save my brain, or what is left of it.

That was when they found multiple ulcers. I also had the severe stomach

cramping. The docs put me on Prilosec for three months -- the pain was

relieved a little bit and the bleeding was gone.

Then a month ago, I started hemorraging from the mouth and had the black

stools. My stomach had really kicked in again before this all started. Did

another one of those 3 initial procedures and found that most of my ulcers

were bleeding. This time I am on Prevacid -- just started helping a little.

There is almost nothing I can eat that doesn't hurt my stomach now. I do

really good with dry toast, chicken soup, mashed potatoes, and bread (lose

weight -- I doubt it)! I was told not to have ANY caffene (sp?) or smoke.

Well one out of two isn't bad!!

I can't wait to find out what they say about Mike.

Hugs,

Biddy

---Original Message-----

To: psc group <egroups>

Date: Monday, September 13, 1999 7:37 PM

Subject: Biddy's poll

>Biddy...this is Lynn..Mike's (PSC patient) wife. Mike was first diagnosed

in

>1997. He went to his doctor as a result of feeling extremely tired...hardly

>moved at all...and with very bad cramping in his stomach area. His medical

>history consisted of being diagnosed with chronic aggressive hepatitis and

>UC in 1968/9 , after his return from Vietnam. About 2 years later he had a

>mild case of Bell's Palsies which affected the right side of his face. You

>see this when he's very tired. Slightly lower eye-lid.

>

>He has had elevate liver function tests since the late 60's. His diagnoses

>was confirmed with an ERCP in 1997..since then he's gone from feeling much,

>much better after the ERCP to nausea, restless nights, depression, severe

>loss of energy to a drastic weight loss.to Drs. seeing a mass in an

>MRI...Thus ultrasound biopsy, no cancer...an ERCP last month when they

>opened two bile ducts..brushings should no signs of cancer. He's scheduled

>for another ERCP in the first week of October to open two additional ducts.

>

>With all the stress I think his UC has kicked in again. Discomfort and

blood

>in his stools. Their going to do an Cholanoscipy (spelling) in October.

>

>He hasn't gone back to school this year. He applied for sick leave and

>hopefully he'll be approved.

>

>Mike does have from time to time URQP, but not lately.

>

>Hope things a going well for you and everyone in the group. My thoughts and

>prayers are always with Jacquelyn. She's such a strong lady. I wish I had

>both her spiritual faith and strength.. My best to you and everyone in the

>group.....Fondly Lynn

>

>

>

>

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[Guest guest]

Hi !

This is so very interesting. So far, a lot of us were exposed to

chemicals in one form or another.

This just may be the beginning. Will just wait for more to e-mail.

I received your response to the poll on Sept. 11! Thank you for this so

much!!

Hugs,

Biddy

Biddy's Poll

>>

>> >Biddy,

>> >

>> >I work for the federal government at Ft. Meade, Md. From 1974 til 1981 I

>> >worked with communciations equipment, teletypewriters. When I would have

to

>> >go out and do preventative maintenance on the equipment, to clean off

all

>> the

>> >excess oil and grease and paper. I would vacuum all the paper out and

then

>> >use Spray Nine, an industrial cleaner to get up some of the oil but then

I

>> >would have to use a spray cleaner that had carbotetrachloride (sp) in

it. I

>> >would spray it on and then vacuum it up. I never got sick from it, it

just

>> >smelled bad.

>> >

>> >Also during that time we moved into a fixer upper house. It needed lots

of

>> >work. Once I finally got to the basement to work on it I pulled the old

>> >paneling off to find a chalky substance on the walls. The old paint was

>> >oxidizing. Not knowing that this was a lead based paint at the time, I

>> >started to brush in off the walls and vacuum it up without the benefit

of a

>> >face mask. The very next day I came down with a fever. I was off work

for a

>> >week. The Drs. couldn't find anything and the fever didn't respond to

>> aspirin

>> >or whatever they gave me at the time. I felt very weak and got dizzy

real

>> >easy. I didn't have any nausea though. From that point I started to lose

>> >weight. I lost a total of about 15 lb. I ate whatever I wanted and

couldn't

>> >gain any weight.( I wish I could do that now ). I felt fine but looked

>> >skinny. I did eventually start gaining weight back. Can't pinpoint how

long

>> >it took. Probably about a year at least.

>> >

>> >Eventually I was told that my bilirubin was a little elevated but I

didn't

>> >look jaundiced. The Drs. told me I had Gilbert's syndrome, an ancestral

>> >related condition usually found in people with a Mediterranean

background.

>> >

>> >I do believe that the times I was using the chemicals at work and the

>> >incident with the house is part of my problem. I don't know if anyone

else

>> >has had some type of incident that parallels this or not. I hope this

>> helps.

>> >

>> >Larry UC-95 PSC-96 land

>> >

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>> >

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[Guest guest]

Biddy,

If your sodium level is okay, try buying soups that are low in sodium

(they usually sell these in the diet isle), they won't burn your stomache as

much. I don't have an ulcer, but when my heartburn would get really bad, all

I was able to eat is plain bread. Stay away from peanut butter, beans, and

any kind of citrus. (Even though I love orange juice, I still can't drink it

without it causing heartburn).

Love,

[Guest guest]

Phil has little skin color wart like thinks on his hands that come and go.

Peg

Vizas wrote:

> I forgot to tell you that Mike has had some shaking in his right hand . From

> time to time its very noticeable. He had rashes around his ankles for about

> a year prior to diagnosis. Lynn

>

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[Guest guest]

Peg....Mike has had a few of these on his hands as well. However we thought

it might be related to being in the sun so much.

Lynn

Re: Biddy's Poll

>Phil has little skin color wart like thinks on his hands that come and go.

>Peg

>

>Vizas wrote:

>

>> I forgot to tell you that Mike has had some shaking in his right hand .

From

>> time to time its very noticeable. He had rashes around his ankles for

about

>> a year prior to diagnosis. Lynn

>>

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[Guest guest]

Biddy, I've read some of the replies to the poll and mine is similar I

suppose. I've been so busy what with school starting, flying to Atlanta for

our son's wedding and having our daughter and fiance' here last weekend to

discuss THEIR wedding plans plus planning a reception/open house for the

newly married son and new daughter in law this coming weekend I'm just

getting to my email which numbers over 270 right now! But here goes:

Noticed fatigue and itching fall of 1990

Had routine health assessment Oct. of 1990

Results: elevated LFT's. Dr. said they were so far out of line there

must be some mistake, wait 3 months.

More blood tests in Dec, 1990

Results: even higher LFT's! My internist referred me to a GI and he did

ultra sound, CT scan and finally a liver biopsy which he dx'd as PBC.

Began Actigal, was already on Azulfadine for UC dx'd a few months earlier.

Regular blood tests for about 7 yrs. GI recommended meeting w/ transplant

team. I chose Denver Porter Care Hosp. because it was near our daughter in

Co. Springs.

Porter Care wanted ERCP done but GI said he was uncomfortable doing it and

said if they want it they can do it. But they didn't!

Spring of 1998 Porter Care told GI, again, they want ERCP done so my GI's

ass't did it. Showed PSC instead of PBC

Itching and fatigue have gradually become worse every year. Worse times have

been during the school year and times of stress. Taking Doxepin, using

Triamcinolone, and light treatments for itching. Have noticed " brain fog "

worsening by the week. Need 10 to 12 hours of sleep a night to function.

GI sent me back to Denver summer of '99 to meet again w/ transplant team

They said it was time to be listed but I didn't hear any more from anyone

about whether or not I was.

Just last week I got a call from my GI's nurse saying to make an app't w/ him

to discuss findings in Denver and start procedure for listing. Today (9/14)

I received a list of tests, etc. they want me to have done. So I guess the

process is started.

Guess that's all I know for now till after my app't w/ the GI on Mon. the

20th of Sept.

Peggy McG

Montana

UC - 10 yrs.

PSC - 9 yrs.

[Guest guest]

Hi!

Thanks for your poll. It is very interesting and I have noticed that

even though we all seem to have the same symptoms, they had occurred

differently in almost everyone.

Again, thanks and I do hope you get on the list very, very soon. Is it

more difficult to get a transplant in Canada than the US? Have heard

different point of views on this one!

Hugs,

Biddy

Re: Biddy's poll

>Biddy, I've read some of the replies to the poll and mine is similar I

>suppose. I've been so busy what with school starting, flying to Atlanta

for

>our son's wedding and having our daughter and fiance' here last weekend to

>discuss THEIR wedding plans plus planning a reception/open house for the

>newly married son and new daughter in law this coming weekend I'm just

>getting to my email which numbers over 270 right now! But here goes:

>Noticed fatigue and itching fall of 1990

>Had routine health assessment Oct. of 1990

> Results: elevated LFT's. Dr. said they were so far out of line there

>must be some mistake, wait 3 months.

>More blood tests in Dec, 1990

> Results: even higher LFT's! My internist referred me to a GI and he

did

>ultra sound, CT scan and finally a liver biopsy which he dx'd as PBC.

>Began Actigal, was already on Azulfadine for UC dx'd a few months earlier.

>Regular blood tests for about 7 yrs. GI recommended meeting w/ transplant

>team. I chose Denver Porter Care Hosp. because it was near our daughter in

>Co. Springs.

>Porter Care wanted ERCP done but GI said he was uncomfortable doing it and

>said if they want it they can do it. But they didn't!

>Spring of 1998 Porter Care told GI, again, they want ERCP done so my GI's

>ass't did it. Showed PSC instead of PBC

>Itching and fatigue have gradually become worse every year. Worse times

have

>been during the school year and times of stress. Taking Doxepin, using

>Triamcinolone, and light treatments for itching. Have noticed " brain fog "

>worsening by the week. Need 10 to 12 hours of sleep a night to function.

>GI sent me back to Denver summer of '99 to meet again w/ transplant team

>They said it was time to be listed but I didn't hear any more from anyone

>about whether or not I was.

>Just last week I got a call from my GI's nurse saying to make an app't w/

him

>to discuss findings in Denver and start procedure for listing. Today

(9/14)

>I received a list of tests, etc. they want me to have done. So I guess the

>process is started.

> Guess that's all I know for now till after my app't w/ the GI on Mon. the

>20th of Sept.

>

>Peggy McG

>Montana

>UC - 10 yrs.

>PSC - 9 yrs.

>

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[Guest guest]

Hi Peggy,

Phil has just completed the barrage of tests. Everything else is great, at one

point they thought he had a blood clot but he doesn't. Next we meet with the tx

coordinator and social worker. Good luck with your tests we'll be praying for

you.

Peg

Mcgovpj@... wrote:

> Biddy, I've read some of the replies to the poll and mine is similar I

> suppose. I've been so busy what with school starting, flying to Atlanta for

> our son's wedding and having our daughter and fiance' here last weekend to

> discuss THEIR wedding plans plus planning a reception/open house for the

> newly married son and new daughter in law this coming weekend I'm just

> getting to my email which numbers over 270 right now! But here goes:

> Noticed fatigue and itching fall of 1990

> Had routine health assessment Oct. of 1990

> Results: elevated LFT's. Dr. said they were so far out of line there

> must be some mistake, wait 3 months.

> More blood tests in Dec, 1990

> Results: even higher LFT's! My internist referred me to a GI and he did

> ultra sound, CT scan and finally a liver biopsy which he dx'd as PBC.

> Began Actigal, was already on Azulfadine for UC dx'd a few months earlier.

> Regular blood tests for about 7 yrs. GI recommended meeting w/ transplant

> team. I chose Denver Porter Care Hosp. because it was near our daughter in

> Co. Springs.

> Porter Care wanted ERCP done but GI said he was uncomfortable doing it and

> said if they want it they can do it. But they didn't!

> Spring of 1998 Porter Care told GI, again, they want ERCP done so my GI's

> ass't did it. Showed PSC instead of PBC

> Itching and fatigue have gradually become worse every year. Worse times have

> been during the school year and times of stress. Taking Doxepin, using

> Triamcinolone, and light treatments for itching. Have noticed " brain fog "

> worsening by the week. Need 10 to 12 hours of sleep a night to function.

> GI sent me back to Denver summer of '99 to meet again w/ transplant team

> They said it was time to be listed but I didn't hear any more from anyone

> about whether or not I was.

> Just last week I got a call from my GI's nurse saying to make an app't w/ him

> to discuss findings in Denver and start procedure for listing. Today (9/14)

> I received a list of tests, etc. they want me to have done. So I guess the

> process is started.

> Guess that's all I know for now till after my app't w/ the GI on Mon. the

> 20th of Sept.

>

> Peggy McG

> Montana

> UC - 10 yrs.

> PSC - 9 yrs.

>

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> Start with up to 150 Points for joining!

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>

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[Guest guest]

Peggy,

I see you as a 2A (almost a 3A) in my poll. (That means PSC symptomatic not

listed 3A would be listed. What is your age and the city and state where you

live.

Thanks.

Peg

Mcgovpj@... wrote:

> Biddy, I've read some of the replies to the poll and mine is similar I

> suppose. I've been so busy what with school starting, flying to Atlanta for

> our son's wedding and having our daughter and fiance' here last weekend to

> discuss THEIR wedding plans plus planning a reception/open house for the

> newly married son and new daughter in law this coming weekend I'm just

> getting to my email which numbers over 270 right now! But here goes:

> Noticed fatigue and itching fall of 1990

> Had routine health assessment Oct. of 1990

> Results: elevated LFT's. Dr. said they were so far out of line there

> must be some mistake, wait 3 months.

> More blood tests in Dec, 1990

> Results: even higher LFT's! My internist referred me to a GI and he did

> ultra sound, CT scan and finally a liver biopsy which he dx'd as PBC.

> Began Actigal, was already on Azulfadine for UC dx'd a few months earlier.

> Regular blood tests for about 7 yrs. GI recommended meeting w/ transplant

> team. I chose Denver Porter Care Hosp. because it was near our daughter in

> Co. Springs.

> Porter Care wanted ERCP done but GI said he was uncomfortable doing it and

> said if they want it they can do it. But they didn't!

> Spring of 1998 Porter Care told GI, again, they want ERCP done so my GI's

> ass't did it. Showed PSC instead of PBC

> Itching and fatigue have gradually become worse every year. Worse times have

> been during the school year and times of stress. Taking Doxepin, using

> Triamcinolone, and light treatments for itching. Have noticed " brain fog "

> worsening by the week. Need 10 to 12 hours of sleep a night to function.

> GI sent me back to Denver summer of '99 to meet again w/ transplant team

> They said it was time to be listed but I didn't hear any more from anyone

> about whether or not I was.

> Just last week I got a call from my GI's nurse saying to make an app't w/ him

> to discuss findings in Denver and start procedure for listing. Today (9/14)

> I received a list of tests, etc. they want me to have done. So I guess the

> process is started.

> Guess that's all I know for now till after my app't w/ the GI on Mon. the

> 20th of Sept.

>

> Peggy McG

> Montana

> UC - 10 yrs.

> PSC - 9 yrs.

>

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

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> Start with up to 150 Points for joining!

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>

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[Guest guest]

.......Is it more difficult to get a transplant in Canada than the US? Have

heard

different point of views on this one!.....

I don't know about Canada.........I live in Billings, MT!

Peggy McG

UC 10 yrs

PSC 9 yrs

[Guest guest]

Peg,

I'm 52. My that sound old when I see it written down! I don't feel any where

near that most of the time! Although when the fatigue sets in & I see no end

in sight for getting extra sleep I sometimes feel that and more! I live in

Billings, MT......north of Denver about 9 hours, and south of Canada about 7

or 8 hours!

Peggy McG

[Guest guest]

Dear Biddy and group,

So sorry it has taken me this long to respond to your poll. As a child I

never felt quite healthy...I always wondered why the other kids had so much

energy and I didn't. My paternal grandma died at 52 from massive abdominal

cancer..could've started as PSC...but we'll never know unless I can get her

records.

Anyway, back to your poll. I was always underweight b/c I had no

appetitie or felt nauseous all of the time. I remember being a teenager and

thinking one of these days a doctor will figure out what's wrong with me b/c

this can't be normal. The Lord laid a conviction on my heart at a very young

age to never drink alcohol...Praise the Lord for that one. I always " itched "

all of the time. In fact my step dad used to call me " itch " as a joke!!

Little did we know??!! Anyway, at nineteen I was in college. I was always

fatigued...always itching and then began to have solid white stools for two

weeks straight. I was so embarrassed, but finally I got up the nerve to tell

Luke (my husband who was my boyfriend then) and my mom and my mom went

ballistic!!

She made me get to the doctor fast. My liver enzymes were mildly elevated.

They decided to leave it alone for awhile and see what happened. It was only

after a very bad attack of cholangitis that we went to a very good GI who

said it sounded to him like PSC. The funny thing is that PSC showed up on my

liver biopsy 2 years prior, but the doctor in Waco didn't think it was

possible b/c I didn't fit the " criteria " .

Anyway, at that point I was given 5 years to live. Luke was still

attending college in Waco and I was in OKC with my family b/c I was to sick

to live alone. Anyway (a little love story for you...) Luke had already

bought my engagement ring and was going to propose to me the next day. I had

a ticket to fly to Dallas to meet him the day after I got the grim news. So

I called him and said, " If you don't want to be with someone that only has 5

years to live, I completely understand. " He said, " If all God allows us is 5

years then it will be the best five years of our lives. I love you and

nothing could ever change that. " Anyway, the next day I got on that plane

and met him at the airport and he got down on his knee in the parking lot and

gave me the most gorgeous ring I had ever seen in all my life....Well, of

course I said " YES!!! " and here we are still together and I'm still alive

almost 10 years later!!! And God has blessed us with two perfectly healthy

children!! God is so good!!!

All I can say...is that the doctors are NOT GOD!!! Put all of your faith

and trust in Him!! Luke and I have had to take many huge leaps of faith, but

God has been there to catch us and bless us every single solitary time. We

were told I would never survive a pregnancy....and just look what God did!!!

Just focus on Christ and all of this will turn out for good!!! I have

held on to this verse from Romans 8:28 through all of the trials and

tribulations.... " For we know that all things work for good to those who love

God and to those who are called according to His purpose. " And then of

course Jodi's precious verse Jer 29:11... " For I know the plans I have for

you... " God is so good and is such an awesome God. If I could encourage

anyone how to fight this disease and WIN!!!! Just trust in the Lord with all

of your might without doubting!!! He will work it for GOOD!!!

OK, enough preaching for today....huh??!!! Take care and Keep Your Chin

Up!!!

Much love to all,

Jacquelyn

[Guest guest]

Jaquelyn, what a beautiful story and I am once again so inspired by your

tremendous faith. I pray that you will be feeling better soon, and I also

pray that God puts his angels in charge of your new liver, to protect it from

PSC and any other germ, disease, injury, etc. that my harm it in any way!!

Take care! Liz

[Guest guest]

Biddy,

Could the test have been called EGD?? Just a thought!!!

Much love,

Jacquelyn