new diagnosis

[Guest guest]

In a message dated 3/7/00 1:10:38 PM Eastern Standard Time,

belinda@... writes: We're looking for a new GI, one who

won't roll his eyes if we ask a question. Think one exists? Meanwhile,

however, this one wants to start combo treatment as soon as possible,

probably late next week. I guess I'm just looking for a little hand-holding

here -- I've only heard horrible things about Rebetron, and I'm really

worried. Does anyone ever weather it well?

****

SP (the drug company which makes the combo)..is actively " educating "

physicians to place all HCV+ patients on the combo, blanket-style.....)

Even within gentotypes which do not historically prove to get good results.

I will problably do the combo, when I get to that point in

Doctor-appt-levels...as i`m so sick with damed virus. But if one wasn`t

sick....in those cases, I`d sure give it a thought before I agreed.

well wishes,

debmc

[Guest guest]

Hi, Belinda. What symptoms does your husband's recent diagnosis explain?

[Guest guest]

Hi Belinda,

I think you'll find everyone on the list to be very supportive. I don't know

where you are located but if you are in the St. Louis area Dr. Bacon is

great! We drive 2hr to get there but it's worth it. As for treatments my

husband has been on Interferon and then they put him on Interferon/Ribovirin

he didn't enjoy it but he did get through it and was still able to go to

work.

Carol

new diagnosis

>From: Belinda Sawyer <belinda@...>

>

>Greetings, all --

>

>My husband was diagnosed about a month ago during a routine physical -- hep

>C explains a lot of the problems he's been having (and having misdiagnosed)

>for the last few years. We're waiting for the viral load test to come back,

>should know numbers (for what that's worth) on Monday.

>

>It's his GI's practice not to do a biopsy--he said, " Why? It's not like it's

>going to be normal. " This is the same guy who said " don't talk to me about

>symptoms, there are no symptoms. " We're looking for a new GI, one who

>won't roll his eyes if we ask a question. Think one exists? Meanwhile,

>however, this one wants to start combo treatment as soon as possible,

>probably late next week. I guess I'm just looking for a little hand-holding

>here -- I've only heard horrible things about Rebetron, and I'm really

>worried. Does anyone ever weather it well?

>

>Our newest daughter is 11 weeks old, DH's company is reorganizing so it's

>not exactly a great time to be out a lot -- I guess there's never a good

>time for this news, huh?

>

>Any encouragement, commiseration or information would be welcome--

>Thanks

>Belinda

>

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>

>

[Guest guest]

Hi Belinda....

I am a 57 yr old female with hepC and a mitochondrial disorder. They

have many sx in common. I am so sorry that you had to seek us out, but

there is info to be had!

Your report of the missed diagnosis is unfortunately very common. I

contracted hepC 15 yrs ago from blood given during heart surgery. I

have just seen a new GI and am being pushed into a biopsy and Rebetron

after all this time. There's a great reference which I will include at

the end of this. (Well, two!)

What area of the country are you in?? I have been embroiled in learning

about Rebetron and may refuse treatment because of my cardiac status.

Just sent some recent info to my cardiologist so he can see what he

thinks.

There are plenty of people on this list who know a lot more than I do

about hepC and Rebetron. They will almost surely respond. Many of them

are also on the list because of their significant others.

I hope all goes as well as possible for you. Hang in there. We'll try

to help!!

Merril

[Guest guest]

Hi Hon know how you feel. My husband went for a few years being ill till

finally in September he was diagnosed with the hep-c. The medical DR says GI

DR probably wont do the biopsy either from the imaging tests looks like

cirrhosis and why bother. Well, I am going with him at the end of this month

to try and change his mind. From all I have read I would rather know for sure

what is what. Otherwise look for a new Dr. He also has hypertension from this

disease and enlarged liver and spleen, chronic fatigue and major depression.

So I am not going to let this end here. I am seriously considering herbal

treatment too. He is still working but not for much longer. Gets to tired and

mind isn't what it use to be. Dont know if I helped but I know how you feel.

Congrats on the new baby, boy or girl? Take care, Irish

[Guest guest]

At 06:31 PM 3/7/2000 -0500, you wrote:

>From: TreeSkinnr@...

>

>Hi, Belinda. What symptoms does your husband's recent diagnosis explain?

>

Stomach disorders (he had a full gi series two summers ago and was finally

sent home with some prilosec which did nothing), frequently recurring

fatigue and achiness --he's always saying he feels like he's coming down

with the flu. Let's see, what else? Nosebleeds, which he was told were a

sign of a sinus infection, migranes, something they thought was thyroid

cancer but then decided they didn't know what it was--from what I've read,

pretty much the usual suspects.

Belinda

[Guest guest]

Hi Belinda,

Sorry for your DH's diagnosis. I agree you should get another physician

immediately. My husband has been on the combo therapy for the past 6

months and is " virus free " . He is taking a maintainance dose of 1.5

million units 3X a week plus six capsules a day. He is feeling pretty darn

good right now. The meds were hard to take for the first 3 or so weeks and

he had a lousy....temper? His doc added a bit of Paxil and it made a

world of difference. Good luck and keep in touch.

Carolee

----------

From: Belinda Sawyer[sMTP:belinda@...]

Sent: Tuesday, March 07, 2000 12:57 PM

Hepatitis Conelist

Subject: new diagnosis

From: Belinda Sawyer <belinda@...>

Greetings, all --

My husband was diagnosed about a month ago during a routine physical -- hep

C explains a lot of the problems he's been having (and having misdiagnosed)

for the last few years. We're waiting for the viral load test to come back,

should know numbers (for what that's worth) on Monday.

It's his GI's practice not to do a biopsy--he said, " Why? It's not like it's

going to be normal. " This is the same guy who said " don't talk to me about

symptoms, there are no symptoms. " We're looking for a new GI, one who

won't roll his eyes if we ask a question. Think one exists? Meanwhile,

however, this one wants to start combo treatment as soon as possible,

probably late next week. I guess I'm just looking for a little hand-holding

here -- I've only heard horrible things about Rebetron, and I'm really

worried. Does anyone ever weather it well?

Our newest daughter is 11 weeks old, DH's company is reorganizing so it's

not exactly a great time to be out a lot -- I guess there's never a good

time for this news, huh?

Any encouragement, commiseration or information would be welcome--

Thanks

Belinda

------------------------------------------------------------------------

GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

1/937/5/_/96144/_/952451859/

------------------------------------------------------------------------

[Guest guest]

Irish: My husband had depression big time and started on Prozac which really

helped. You mentioned you don't know how much longer he will be able to

work. Mine has not worked in about 3 years. Has anyone on this list used

Hep C to collect Social Security disability benefits? He is opposed to

applying (pride), but it would help.

[Guest guest]

Tree, when we applied for the disability we were told that either SSI or SSD

will pick up the difference. He had the DR fill out the disability papers and

now it is the waiting game. Dont want him to go on Ss just yet SSI is better

at this point and they should give it for it is a disabling disease,Dr;s

notes and physical are all that is needed. with regular SS you get Medicare

and that is not enough for DR visits and all. It was actually the DR and the

Medicaid office who told us what we should do. Sorry to hear about your

husband being out of work must be very hard. This is why mine didn't want to

apply He feels like he is failing his family because he wont be able to work

much longer. I want to try ST 's wart for him before he goes on

prescribed meds,any personal info on that have you tried that? I have read a

lot about it and figure it cant hurt and the side effects if any are moderate

and it isnt habit forming. hope to hear from you again, Irish

[Guest guest]

Tree...

I am on SS disability, but my cardiac problems (heart surgery twice,

three small MIs) were the basis. There are people in my mitochondrial

disorder group who are receiving benefits on that basis. I would

imagine that proven hepC would go through without a lot of fuss right

now as long as you have a doc who will do the right paperwork. The

political climate about hepC is such that I think the " authorities "

would be afraid NOT to approve it. Good luck, there IS a lot of

paperwork. Two years after you are granted SS disability, you are

automatically placed on Medicare (if you do the paperwork!!!).

[Guest guest]

Thanks Merrill. My husband is resisting, but I'm going to work on him! So

the first stop would be with Social Security to get the forms, right? Then

the doctor fills them out? I went to the Soc Sec web site, and they mention

the illness has to be on their list of approved illnesses, but I they don't

post the list (or I couldn't find it). Then what are the benefits based

on--your salary when you worked? Tree

[Guest guest]

Thanks, Irish. It does make my husband feel like he's giving up (and never

working again) if he goes on Soc Sec.

I don't have any personal knowledge about St. 's Wort. My husband takes

Prozac. Wonder if it's okay on the liver? Tree

[Guest guest]

Tree....

If you are getting Social Security Disability (which means getting SS

early), they base it on the last 10 quarters that you worked. Or at

least they did in 1994!!!!

Merril

[Guest guest]

My husband wasnt sick when he started the combo treatment so he did ok but i

left him from before he started it, i wasnt supportive, and he fell into

depression, had a serious anxiety reaction , and ended up in a mental

institution. i went and got him out.The psych. said the anx. reaction was

due to the toxicity of the drugs, and well.....it took months for him to

recover. If he had more social support, i dont think this would have

happened.....so emotional support is required.

The biopsy was awful. they pierced 3 times before they got a piece. Please

make sure an experienced doctor does the biopsy, not a trainneee or someone

who hasnt done it before!!!!!!!!!

>From: PaddyP5@...

>Reply-Hepatitis Conelist

>Hepatitis Conelist

>Subject: Re: new diagnosis

>Date: Tue, 7 Mar 2000 22:24:30 EST

>

>Hi Hon know how you feel. My husband went for a few years being ill till

>finally in September he was diagnosed with the hep-c. The medical DR says

>GI

>DR probably wont do the biopsy either from the imaging tests looks like

>cirrhosis and why bother. Well, I am going with him at the end of this

>month

>to try and change his mind. From all I have read I would rather know for

>sure

>what is what. Otherwise look for a new Dr. He also has hypertension from

>this

>disease and enlarged liver and spleen, chronic fatigue and major

>depression.

>So I am not going to let this end here. I am seriously considering herbal

>treatment too. He is still working but not for much longer. Gets to tired

>and

>mind isn't what it use to be. Dont know if I helped but I know how you

>feel.

>Congrats on the new baby, boy or girl? Take care, Irish

______________________________________________________

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[Guest guest]

Hello there. My daughter has primordial dwarfism. She's been diagnosed with

the Lin form, type 2, because of micro mini teeth. She is 8 years old, 34

inches tall and 22 pounds with her clothes wet. We've also been told she has

a smaller head (microcephalic). Anyway, she was diagnosed by Dr.

i at the University of Wisconin Genetic Center (in Madison). He's a

member of the LPA Medical Advisory Board. I'd be happy to pass on his name

and number if you'd like to call him. ;You might also want to contact Dr.

, who is currently chair of the LPA Medical Advisory Board.

Also, you'll also want to contact Jackie Kritzach. Her daughter's a

primoridial dwarf, too. And Jackie is compiling a networking list for parents

who's children have been diagnosed with primordial dwarfism.

Downside is, this type of dwarfism is so rare there's not a lot of info about

it. Upside is, a group of us (about 7) met at the national this summer in

Minnesota and we've begun networking, collecting information about our kids

in one place and we're working on a website about primordial dwarfism and a

lot of us have resources we can pass on about schooling and physicians

familiar with the dwarfism, etc.

[Guest guest]

Dan,

A primordial website is in the works. One of our parent's network members has

offered to design it. We'll let you know as soon as it's live.

Kim Winters

[Guest guest]

I've been looking for some decent information about primordial

dwarfism that I can link from " Dwarfism Types and Definitions, " and

unfortunately have been unable to find anything. It would be a

terrific service to the entire community if you could do a Web site.

>Hello there. My daughter has primordial dwarfism. She's been diagnosed with

>the Lin form, type 2, because of micro mini teeth. She is 8 years old, 34

>inches tall and 22 pounds with her clothes wet. We've also been told she has

>a smaller head (microcephalic). Anyway, she was diagnosed by Dr.

>i at the University of Wisconin Genetic Center (in Madison). He's a

>member of the LPA Medical Advisory Board. I'd be happy to pass on his name

>and number if you'd like to call him. ;You might also want to contact Dr.

> , who is currently chair of the LPA Medical Advisory Board.

>Also, you'll also want to contact Jackie Kritzach. Her daughter's a

>primoridial dwarf, too. And Jackie is compiling a networking list for parents

>who's children have been diagnosed with primordial dwarfism.

>

>Downside is, this type of dwarfism is so rare there's not a lot of info about

>it. Upside is, a group of us (about 7) met at the national this summer in

>Minnesota and we've begun networking, collecting information about our kids

>in one place and we're working on a website about primordial dwarfism and a

>lot of us have resources we can pass on about schooling and physicians

>familiar with the dwarfism, etc.

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

Dan Kennedy

Internet services coordinator

Little People of America, Inc.

http://www.lpaonline.org

[Guest guest]

Dear Debbie,

Welcome to the group!

Your immediate challenge will be your adjustment to taking 60 mgs. of

Prednisone.

Make sure that you are getting 1500 mg. of calcium with vitamine D (500 mg. 3

X a day). Prednisone can cause your bones to thin.

If you have trouble sleeping, talk to your doctor about putting you on a

sleep aid. My doctor prescribed Ambien. I took it every night until I was

down to 5 mg. of Pred.

You may also encounter trouble with your stomach. Prevacid is what helped me

deal with acid reflux.

Physicians don't usually tell you what you might encounter. They just wait

for you to call and tell them the side effects.

Maybe you won't have any problems taking Prednisone, but if you do, don't

hesitate to get help for the side effects.

Good luck to you!

[Guest guest]

DEBBIE

First off all hang in there> This web site will help you alot Everybody

here has diffrent degrees of aih. Ask away and you will get many answers

to as many questions you ask

heidi

[Guest guest]

Debbie,

Welcome to the group. I was just diagnosed Wed. You'll love this support

group. I have learned alot already just by being on the list for two days!

The people are all so helpful and friendly. I don't have anything to tell

you...just thanks for asking the questions... I'll benefit from their

answers too!

Beth

33 years old, married, mother of an eighteen month old

[ ] New diagnosis

> I have just been officially diagnosed with autoimmune hepatitis. I

> say officially because I've only been at this for a month. Finally

> did the liver biopsy this past Tues. Now that I know for sure what

> I'm dealing with I would like some input into what I can expect. I'm

> also diabetic for 26yrs. and I'm 44yrs. old. The doc has put me on

> 60mg of prednisone. I'ld appreciate any help. I've done some

> reading but still have little knowledge of what I'm dealing with.

> HELP!

> Debbie

>

>

>

>

[Guest guest]

Debbie

60mgs of prednisone is a pretty high dose>i an just starting to taper

expect some or ost of these things: night sweats-nervous-hunger-water

retention-weight gain-feeling anxious many others can tell you some of

theri side effects>DONT GETME WRONG OT CAJN MAKE YOU FEEL WONDERFUL AT

THE SAME TIME

HANG IN THERE

HEIDI

[Guest guest]

Hi Debbie,

And welcome to the group. I was diagnosed as AIH in September, am 47

years old, and joined this group about 12 days ago. There are lots

of good and knowledeable people here to support you.

I had several complaints about my 30 mg. a day of Prednisone. Mostly

sleep related and nervousness. But my biopsy was very, very, bad and

the Doctor predicted that my body would adjust to it. I'm happy to

say that by the third week I was sleeping like a baby. My blood

tests improve every two weeks and after 6 weeks they reduced my dose

to 20 milligrams. I still feel a bit shaky and nervous but am able

to work full time.

I recommend Dr. Palmers book " Hepatitis and Liver Disease. "

It's $13.95 plus shipping on Amazon.com. It's written in layman

terms and has a chapter on AIH.

Hugs,

Patty O'

> I have just been officially diagnosed with autoimmune hepatitis. I

> say officially because I've only been at this for a month. Finally

> did the liver biopsy this past Tues. Now that I know for sure what

> I'm dealing with I would like some input into what I can expect.

I'm

> also diabetic for 26yrs. and I'm 44yrs. old. The doc has put me on

> 60mg of prednisone. I'ld appreciate any help. I've done some

> reading but still have little knowledge of what I'm dealing with.

> HELP!

> Debbie

[Guest guest]

Debbie:

Welcome to the group, it's a very good group. I got DX'ed back in August

and I also got start edoff at 60mg, I'm now down to 10mg now. The hep is

lowering me down to a maintenance dose, where the liver counts are

manageable. Have you gotten a copy of the pathology report from the

biopsy? Is there any scaring, how much? Have they done CAT Scans or

MRI's, is the liver in good overall shape, are there any spots in the

CAT Scan? How high are your liver counts? Did the doctor know that you

are diabetic when he prescribed prednisone, prednisone increases the

blood sugar?

Welcome to the Group

Clyde

dfisher4140@... wrote:

>

> I have just been officially diagnosed with autoimmune hepatitis. I

> say officially because I've only been at this for a month. Finally

> did the liver biopsy this past Tues. Now that I know for sure what

> I'm dealing with I would like some input into what I can expect. I'm

> also diabetic for 26yrs. and I'm 44yrs. old. The doc has put me on

> 60mg of prednisone. I'ld appreciate any help. I've done some

> reading but still have little knowledge of what I'm dealing with.

> HELP!

> Debbie

>

> eGroups Sponsor

>

>

>

[Guest guest]

Good luck with liver biopsy. It's not bad. Had one at the onset of my

diagnosis. Was sedated. Don't remember a thing. My platelet count is to

low at this point and my PT is way out so they don't want to risk bleeding to

have another right now. Still up and down on prednisone.

Look forward to hearing from you.

[Guest guest]

In a message dated 12/3/01 5:43:04 PM Pacific Standard Time, suzeqsez@... writes:

Hey guys! I have been reading your posts for the last couple of days. I was

told last Tuesday that I have AIH. I go in for my liver biopsy Wednesday. I

have absolutely no idea as to what is ahead of me. I will continue to look

to you for support and info. Thanks for being there.

Su in Kentucky

Hi Sue,

WELCOME TO OUR WONDERFUL GROUP!

sorry it's not under different circumstances though........I am a new member too......about 3 weeks now I think.....

here you will find a bunch of WONDERFUL PEOPLE that will answer ANY QUESTION you may have....GIVE YOU ALL THE SUPPORT YOU CAN IMAGINE!!! PLUS.....learn so much...FAST, just by reading all this great info!

and the best thing of all....???? you can VENT ANYTIME YOU WANT!

and everyone WILL UNDERSTAND!

Be sure to keep us updated! we'll be watching for your posts!

GOOD LUCK WITH THE BIOPSY!

Take care....

**HAPPY**HOLIDAYS**

**AND WARM HUGS**

Bert.