Re: Digest Number 335

[Guest guest]

Caseyspa,

That is the kind of pain I have been having, but no fever. My doc wants to

do endoscopy, but I am wondering if it will show source of pain. How do

they diagnose pancratitis, what tests do they do.

J

>From: Caseyspa@...

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>Subject: Re: [ ] Digest Number 335

>Date: Sun, 19 Sep 1999 21:21:42 EDT

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>From: Caseyspa@...

>

>Dear Kathy and J:

>

>Thanks for your thoughts. I am getting better every day and hope to be out

>the hospital in a day or two. My scenario's a little different from yours,

>Kathy, in that the only medications I'm on for PSC are the URSO and the

>milk

>thistle. I've never been placed on any steroids.

>

>, in answer to your question, the pancreatitis I had was preceded by

>nausea and mid-abdominal dull burning pain that escalated to severe

>cramping

>pain that bore through to the back. I also had general fatigue, fever and

>chills.

>

>Caseyspa

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

[Guest guest]

Dear Kathy and J:

Thanks for your thoughts. I am getting better every day and hope to be out

the hospital in a day or two. My scenario's a little different from yours,

Kathy, in that the only medications I'm on for PSC are the URSO and the milk

thistle. I've never been placed on any steroids.

, in answer to your question, the pancreatitis I had was preceded by

nausea and mid-abdominal dull burning pain that escalated to severe cramping

pain that bore through to the back. I also had general fatigue, fever and

chills.

Caseyspa

[Guest guest]

Tomorrow I go to hepatologist for first time. Any advice about what to take

and what to say?

J

>From: " susan johnson " <shireen42@...>

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>Subject: Re: [ ] Digest Number 335

>Date: Sun, 19 Sep 1999 19:36:16 PDT

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>From: " susan johnson " <shireen42@...>

>

>Caseyspa,

>

>That is the kind of pain I have been having, but no fever. My doc wants to

>do endoscopy, but I am wondering if it will show source of pain. How do

>they diagnose pancratitis, what tests do they do.

>

> J

>

>

>>From: Caseyspa@...

>>Reply- onelist

>> onelist

>>Subject: Re: [ ] Digest Number 335

>>Date: Sun, 19 Sep 1999 21:21:42 EDT

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>>From: Caseyspa@...

>>

>>Dear Kathy and J:

>>

>>Thanks for your thoughts. I am getting better every day and hope to be out

>>the hospital in a day or two. My scenario's a little different from

>>yours,

>>Kathy, in that the only medications I'm on for PSC are the URSO and the

>>milk

>>thistle. I've never been placed on any steroids.

>>

>>, in answer to your question, the pancreatitis I had was preceded by

>>nausea and mid-abdominal dull burning pain that escalated to severe

>>cramping

>>pain that bore through to the back. I also had general fatigue, fever and

>>chills.

>>

>>Caseyspa

>>

>>>Please support the American Liver Foundation!

>>

>>1.) To subscribe send e-mail to -subscribeonelist

>>2.) To UNsubscribe send to -unsubscribeonelist

>>3.) Digest e-mail format send to -digestonelist

>>4.) Normal e-mail format send to -normalonelist

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

[Guest guest]

Dear ,

The best thing to have is a list of questions and symptoms written down. We

found this to be an effective way to make sure all our concerns were

addressed. The doctor appreciated our organized approach. Take any

copies of lab/dr tests you may have and a list of any medications you are

taking and have taken in the past. Also any over the counter drugs. We

wish you luck and youre in our prayers.

Cheryl & Randy

West Virginia

[Guest guest]

Will you tell me some questions i might ask, I am so afraid I will forget

something important. I had to wait a long time to get this appointment.

J

>From: Cheryl722@...

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>Subject: Re: [ ] Digest Number 335

>Date: Mon, 20 Sep 1999 16:13:55 EDT

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>From: Cheryl722@...

>

>Dear ,

>

>The best thing to have is a list of questions and symptoms written down.

>We

>found this to be an effective way to make sure all our concerns were

>addressed. The doctor appreciated our organized approach. Take any

>copies of lab/dr tests you may have and a list of any medications you are

>taking and have taken in the past. Also any over the counter drugs. We

>wish you luck and youre in our prayers.

>

>Cheryl & Randy

>West Virginia

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

[Guest guest]

Cheryl

Do you and Randy have a specific Dr. in Cleveland, Let me know who it is?

Peace

[Guest guest]

Dear :

I was fortunate enough to observe the symptoms Randy was having for about a

month before we went to the doctor. I immediately immersed myself in

everything I could get my hands on about AIH and began to look for possible

causes and solutions to some of the awful things happening to him: leg

cramps(had him eat bananas), severe burning in his chest( stopped his daily

glass of orange juice), changed his meals to 6-8 a day vs just 3 and made

sure he drank lots and lots of fluids.

You should ask your doctor about anything you notice that is different now

and let him/her know how often it occurs ie: any hair loss, change in

libido, achiness, difficulty sleeping, mood swings, general malaise,

confusion, fatigue, not enjoying things you used to, depression or

anxiety(and its ok to have these two), lack of or overly strong appetite, dry

skin or patches of dry skin, nosebleeds, anxiousness, any feelings or

thoughts you don't normally have, dreams, itchiness, muscle/bone aches, tooth

aches, changes in sinus...... anything no matter how minor should be

mentioned and make sure your doctor addresses each one. The written list

enables you to check off each one and not let them just skip over some.

Make sure you take a list of the meds youre taking and any over the counter

meds you are taking or took and why you are taking them.

Any tests or labs he may order, find out what he is looking for and why.

When the results come in make sure he explains them. Don't be shy -- ask

sternly if you don't feel you got an answer you understood or felt you didn't

get all the info. Don't forget youre the one who will be in charge of your

destiny here and treatment. You will sometimes have to demand that

something be done -- dont sit back idle.

Good luck!

Cheryl & Randy

West Virginia

[Guest guest]

Dear ,

Our doctor is Dr. -- he was assigned to us when we got there. We

saw Dr. Vogt of the transplant team and I will be meeting with Dr.

on Friday. I understand Dr. is head of the transplant team and one

of the doctors who studied in Japan about living donors. He will heading the

assessment of my qualifications.

Cheryl & Randy

West Virginia

[Guest guest]

Well, I am back from my first visit to hepatologist.

Basically he doesnt seem too concerned, but wont really commit until he sees

the biopsy slides himself. He wants to see how much inflammation. He did

mention actigall for itching and if not available, urso. Have to wait a

couple of weeks for follow-up.

Thanks for listening.

J

>From: Cheryl722@...

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>Subject: Re: [ ] Digest Number 335

>Date: Tue, 21 Sep 1999 08:10:05 EDT

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>From: Cheryl722@...

>

>Dear :

>

>I was fortunate enough to observe the symptoms Randy was having for about a

>month before we went to the doctor. I immediately immersed myself in

>everything I could get my hands on about AIH and began to look for possible

>causes and solutions to some of the awful things happening to him: leg

>cramps(had him eat bananas), severe burning in his chest( stopped his daily

>glass of orange juice), changed his meals to 6-8 a day vs just 3 and made

>sure he drank lots and lots of fluids.

>

>You should ask your doctor about anything you notice that is different now

>and let him/her know how often it occurs ie: any hair loss, change in

>libido, achiness, difficulty sleeping, mood swings, general malaise,

>confusion, fatigue, not enjoying things you used to, depression or

>anxiety(and its ok to have these two), lack of or overly strong appetite,

>dry

>skin or patches of dry skin, nosebleeds, anxiousness, any feelings or

>thoughts you don't normally have, dreams, itchiness, muscle/bone aches,

>tooth

>aches, changes in sinus...... anything no matter how minor should be

>mentioned and make sure your doctor addresses each one. The written list

>enables you to check off each one and not let them just skip over some.

>

>Make sure you take a list of the meds youre taking and any over the counter

>meds you are taking or took and why you are taking them.

>

>Any tests or labs he may order, find out what he is looking for and why.

>When the results come in make sure he explains them. Don't be shy -- ask

>sternly if you don't feel you got an answer you understood or felt you

>didn't

>get all the info. Don't forget youre the one who will be in charge of

>your

>destiny here and treatment. You will sometimes have to demand that

>something be done -- dont sit back idle.

>

>Good luck!

>

>Cheryl & Randy

>West Virginia

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

[Guest guest]

, guess my diagnosis is fatty liver. He did say they are learning

more and more about that condition. He didnt say much about abdominal pain,

but he knows I am having an endoscopy on Thursday. By not too concerned, he

thinks my condition might be just due to overweight or diabetes. Wants me

to lose weight. Fat chance of that happening. (pun intended)

J

>From: La7de@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Digest Number 335

>Date: Tue, 21 Sep 1999 18:13:28 EDT

>MIME-Version: 1.0

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>From: La7de@...

>

> J,

>

>I'm sorry he didn't seem too concerned, that is the same treatment I've

>had,

>and it hurts. Especially when we FEEL so bad... Now the waiting begins,

>again. Have you ever been diagnosed? I'm sorry but my mind isn't working

>too well lately and I've forgotten. Did you go to a University for their

>opinion?

>Hang in there honey, we all know what you are going thru!

>

>Laureen (AIH)

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

>

[Guest guest]

This doc is associated with Jefferson University Hospital in PA and is head

of the transplant team there.

J

>From: La7de@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Digest Number 335

>Date: Tue, 21 Sep 1999 18:13:28 EDT

>MIME-Version: 1.0

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>

>From: La7de@...

>

> J,

>

>I'm sorry he didn't seem too concerned, that is the same treatment I've

>had,

>and it hurts. Especially when we FEEL so bad... Now the waiting begins,

>again. Have you ever been diagnosed? I'm sorry but my mind isn't working

>too well lately and I've forgotten. Did you go to a University for their

>opinion?

>Hang in there honey, we all know what you are going thru!

>

>Laureen (AIH)

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

>

[Guest guest]

High bile acids and high alk phos, dont know about the other liver tests.

J

>From: La7de@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Digest Number 335

>Date: Tue, 21 Sep 1999 18:38:18 EDT

>MIME-Version: 1.0

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>From: La7de@...

>

> J,

>

>What kind of results have you had on your blood tests?

>

>

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

>

[Guest guest]

J,

I'm sorry he didn't seem too concerned, that is the same treatment I've had,

and it hurts. Especially when we FEEL so bad... Now the waiting begins,

again. Have you ever been diagnosed? I'm sorry but my mind isn't working

too well lately and I've forgotten. Did you go to a University for their

opinion?

Hang in there honey, we all know what you are going thru!

Laureen (AIH)

[Guest guest]

J,

What kind of results have you had on your blood tests?

[Guest guest]

Hi everyone! Someone in my school asked me to ask this question. A friend

of theirs just had a liver transplant and doesn't want to recoperate in a

nursing home. (He had no family) He is a Viet Nam veteran. Is there another

facility that can be used? Also he seems really " out of it " (transplant last

week). I thought it might be from the drugs. Can anyone verify that?.

Thanks a lot.

Jaye (Tara's mother-AIH)

[Guest guest]

Hi All,

Remind me not to get behind in my digests! We are a talkative bunch. I've

been otherwise occupied, with stuff including the Connecticut Mothers of

Twins Club state convention (a blast) and our local club's annual Health Fair

which I helped organize. So excuse the impersonality of a compiled response,

but here goes:

--Welcome anne! Congratulations on the arrival of your triplets.

You've certainly had your hands full but you've come to the right place for

support and understanding. My twins are over 3 1/2, Eli has DS but his

sister Milo doesn't. I also have a 6 year old named Logan. I often feel

that mix of sad and happy, throw a little guilt in ovr the sad part. But it

has lessened as time goes on. It will for you too.

--Happy Birthday to all the little lovelies whose big days I missed, and to

your mommies too who also deserve presents on your birthday!

--1, how scary for you. Hope you have the chance to really rest and

recover

So Happy Spring to everyone!

love debbi in CT

[Guest guest]

> I found recipes for bath bombs and they look great to try. My one

question

> is regarding the ingredient Borax. Is that the same as the Borax Arm and

> Hammer has in the grocery stores. I purchased it with second thoughts

about

> using it. Please advise. Thanks!

YES IT IS =)

[Guest guest]

Hey Taz, I thought I read that you and Nic were rooming? Did Nic chicken

out?

Everyone: I was at the last BFL weekend in Vegas (I live here) and it was a

BLAST!!!!! Talk about nice people! And motivation!!!!!!

MN: You coming?

See ya soon! ( & Jimmy)

[Guest guest]

In a message dated 02-Oct-00 11:11:45 PM Eastern Daylight Time,

JKH8025@... writes:

> Did Nic chicken

> out?

>

I didn't " chicken " out. It's my anniversary weekend of one year with my

boyfriend who's going to Kuwait next month for 6 months for the Army. So I'm

spending as much time as possible with him. It's our ANNIVERSARY for crying

out loud!

That and the airfare to Vegas is $450 and this poor grad student can't afford

that, and hotel, and tickets, and food!!! I was dirt poor and depressed by

the end of the first Vegas bash. People were throwing down cash the size of

my rent payment and phone bill on the craps table. It just freaked me out!

So, not this time. The Wish Lift in Indiana is more important. Plus there's

BFL Bash in Orlando, Florida, the weekend of Feb. 9th. Your co-hosts are

, Shontell, and yours truely!!!

Be there or L7 baby!

-

[Guest guest]

Sorry I don't have any of the signs of parasites and my ancestors back before 1900 who had the disease were not exposed to all of the things you mentioned. I am comfortable in saying, my thyroid problem was genetic and runs along my ancestral tree. I can't speak for others though. I feel better all of the time with the cytomel/synthroid combo.

hypothyroidismegroups wrote:

[Guest guest]

Funny how so many families seem to have a genetic weakness in the thyroid.

Are you aware that synthroid is on the top 10 list for common prescriptions?

Are you also aware that nutritional deficiencies are passed along through

the genes?

I don't deny that radiation is a factor, there are many factors. A

disorganized immune system(often a result of hidden allergies), heavy metal

toxicity, nutritional deficiencies, viruses, parasites, overloaded

liver...which came first...it all depends on whether you have a low

functioning thyroid or an auto immune thyroid.

I'm glad you found something that works for you. If you are happy with a

bandaid. I stopped taking synthroid because I could feel the calcium being

drained from my body.

" A study done at the University of Massachusetts found that thyroxine can

cause a loss of bone mass. "

I just feel one should make an educated decision.

Donna

P.S.

Are you also aware that doctors get residuals or " kickback " from the

pharmaseutical companies? ($$$)

>

>Message: 1

> Date: Sun, 7 Jan 2001 03:45:52 -0800 (PST)

> From: Cline <cynthiajcline@...>

>Subject: Re: Digest Number 334

>

>

> I can't agree that your causes that you list caused my thyroid condition.

>It tends to definately run in a genetic pattern in my mother's family and I

>have traced it back with genealogy research as far back as the mid 1800's

>in my family. We all didn't stay in the same place either and are spread

>out in several states since then. No, I have to say my problems with the

>thyroid gland are definately genetic. I have also read that some people's

>thyroid problems can be caused by radiation exposure or by exposure to way

>too many x-rays as a child like they did in the 1950's. I have been on the

>cytomel/synthroid combo for a month now and it is working great for me. I

>respond to the inert ingredients as well. I feel better much better than

>even my earlier post. I tried the natural stuff and it didn't work for me.

>I still had to have surgery. I do think some people do respond to the

>natural stuff but not all do. My endocronologist that I see here in Houston

>says he has some people on what I take, some on armour, some on generics

>that it changes with each person and some who do well just with supplments.

>He is right though, I refuse to give up the cytomel/synthroid combo. He

>said everyone he has put on this combo tells him that after they adjust to

>it. I have adjusted and I refuse to give it up. I am still working on the

>weight issue. I now feel like exercising and I am am sort of doing a

>modified diabetic/zone diet. We will see how it goes.

>

>

>

>

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

>

[Guest guest]

What has been up with this group lately? The tone no longer seems to be about recovery from our disease. Can someone please reply?

[Guest guest]

Guess we're just jokin' about as it makes some laugh & helps to get

their minds off the dragon for a bit....please don't be too harsh on us......as

we all need a break @ times...... & this seems to help......Lughter

will make the world a better place!!

arlene

VicLea227@... wrote:

What

has been up with this group lately? The tone no longer seems to be

about recovery from our disease. Can someone please reply?

[Guest guest]

Robet --so sorry to hear of your failed tx.hopeffully they'll come up with

something better soon..... I have never been able to partake of any of

the treatments....

And you seem to write just fine!! Got that truck running??

arlene

Wish I was able to work just to bide my time....but I've got the CRS

syndrome so bad most of the time ---I'm lucky to remember to take

my meds @ times & I have to take 'em 2x daily!!!

wrote:

Hi

Vicky I'm sure that

all of us want to recover. I guess that maybe lately everyone has wanted

to forget about all of our problems and have a little fun. I haven't been

participating like I want to. I have had a lot of thing to occupy my time

these last couple of weeks. Had to get my truck running again, and have

been very busy at work. Last

Tuesday I got the results of my last pcr test. The news wasn't good. Still

positive after 15 months of treatment. Don't know the viral load as it

was only the qualitative test instead of the quantitative. The Dr. is going

to order one. Since I have to use the VA I must wait until Aug. for my

lab appointment. Personally I don't think that I want to go through a third

round of treatment just to be disappointed again. At least until there

is another treatment developed that might have better results. Please don't

get the Idea that I have given up. I haven't given up, I'm trying some

alternative treatments until then. Well

it's almost time for me to go to work so I guess I'll have to go for now.

Re: [ ]

Digest Number 335

What has been up with

this group lately? The tone no longer seems to be about recovery

from our disease. Can someone please reply?

[Guest guest]

As usual Diane----you said it all agin!!<g> Sometimes my brain just get

overwhelmed & I also enjoy the chuckles & cuttin' up I enjoy this support

group cause you can say what's on your mind whether it be cuttin'

up-venting-poring out out about aches & pains & of course the info & links

that Sharon is now providing us with.......Glad for having new memebers & old

alike......I'd like to say we're all pretty young in spirit--no matter our

age & sickness......most all of us absolutely refuse to grow old..... & detest

this dreaded disease!!!!!

]arlene

diane214@... wrote:

> I am praying for you ! Miracles can happen.....I am praying for

> one as nothing helps me...... As for you -dz-..... You are just making

> it easier for those 36 inchers of Jan to catch you quicker...... I

> truthfully find this group boring without the fun and laughter..... (g)

> So get out here Jan and get the fun going ;o....... -dz-AND ROBERT ARE

> CHUNKIN UP. LOL

> Dennis is really busy working to get ready for spring..... I'll bet it

> is beautiful there in the spring and summer Dennis... Without laughter I

> find that I feel worse..... I am sure a lot agree.... There is no reason

> for anyone not to join in..... We are a support group and we don't

> always have to be comparing viral loads and liver enzymes.... If we need

> to speak of our test or pains we always do... But I also enjoy the

> cutting up... It makes me not have to think of my illness.... I am

> Thankful for each and every one of you... The hell with my web tv and

> losing messages.... I would rather get some then none at all.... Now

> lets get the ball rolling here!!!!!!! ;o ;o ;o ;o

> Vicky jump in at any time... You can't be part of something if you

> don't join in..... As for the newcomers .... Keep it coming..... I

> personally enjoy all of you. ;o

>

> Angel Hugs,

> Diane

>

> May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

>

>

>

>

>