Re: Father just Diagnosed-HELP

[Guest guest]

In a message dated 10/5/01 11:41:11 AM Pacific Daylight Time, JudieV@... writes:

My 87 year old father was just diagnosed with Autoimmune Hepatitis which we are told led to severe liver damage. The doctor was very straight forward & said the medicine to treat the disease would make him very uncomfortable & seeing as he was still feeling "fine", there seemed to be no sense in giving him the meds.They feel at his age it's sensless to make whatever time he has left miserable. Though untreated he could have 2 to 3 years left.

Bless my Dad.he said no to the meds...."I'd rather live to 90 feeling ok for as long as I can than taking stuff I know will make me feel awful now.

I'm a nurse (psych not medicine) and suffer from my own autoimmune disease (RSD) So any information, ideas, or feeling would be of great help. It was aboard such as this that got me to the help I needed!

Thanks

JudieV

I'm very sorry to hear about your father's situation. I hope you're able to find ways to keep him comfortable and happy for a long time.

If itching begins to be a problem for him, Atarax and Benadryl help some people.

What is your autoimmune disease, RSD? Yesterday I posted a fairly recent article from the New York Times on the familial aspects of autoimmune diseases. It doesn't offer any suggestions about dealing with the diseases, but it holds some intellectual interest.

Best wishes.

Harper (AIH 5/00)

[Guest guest]

thank you for your response. Yes it's RSD, although it never gets a mention in any of the literature. I read the article with great interest. Nice to know being female gives us all these added luxuries! LOL! I've had it for 7 years (diagnosed) But I'm not the subject here. I just want help knowing we're on the right path. I'm always doubtful when the advice is based on age, sex etc. That's why sites like yours are so important.

thanks for being there.

JudieV@...

[Guest guest]

In a message dated 10/5/01 12:19:44 PM Pacific Daylight Time, JudieV@... writes:

Yes it's RSD, although it never gets a mention in any of the literature

But what is RSD? I don't know the acronym.

Harper

[Guest guest]

In a message dated 10/5/01 12:19:44 PM Pacific Daylight Time, JudieV@... writes:

I just want help knowing we're on the right path. I'm always doubtful when the advice is based on age, sex etc. That's why sites like yours are so important.

If you (and other new people) are looking for a comprehensive, yet simple and readable reference book, try Dr. Palmer's "Guide to Hepatitis and Liver Disease." It's $15 or less, depending on where you buy it (about $11 on her website, about $13 at Amazon.com.)

Harper

[Guest guest]

Judy, really really sorry for you dad! It is hard to see our parents ill! I am very new at this, and am just learning about it all myself. There are plenty of people here who are very knowledgeable here! I know they will give you lots of help!

debby

[ ] Father just Diagnosed-HELP

My 87 year old father was just diagnosed with Autoimmune Hepatitis which we are told led to severe liver damage. The doctor was very straight forward & said the medicine to treat the disease would make him very uncomfortable & seeing as he was still feeling "fine", there seemed to be no sense in giving him the meds.They feel at his age it's sensless to make whatever time he has left miserable. Though untreated he could have 2 to 3 years left. Bless my Dad.he said no to the meds...."I'd rather live to 90 feeling ok for as long as I can than taking stuff I know will make me feel awful now.I'm a nurse (psych not medicine) and suffer from my own autoimmune disease (RSD) So any information, ideas, or feeling would be of great help. It was aboard such as this that got me to the help I needed!ThanksJudieV

[Guest guest]

Reflex sympathetic dystrophy. The sympathetic nervous system turns on you and won't shut off. So it's like getting a bad burn on your arm and then it decides to spread where ever it chooses. I went from left shoulder/arm to full body. Some docs believe it to be in the same family as Lupus & MS. They changed the name about 2? years ago to Chronic Reigonal Pain Syndrome. Another one of those primarily female diseases that start with "your crazy" and end with "oh, it's such a rare disease". I'm lucky & have a great specialist in NY. I commute <G> I'm looking for a general doc down here.

Hugs

Judie

[Guest guest]

In a message dated 10/5/01 4:43:27 PM Pacific Daylight Time, JudieV@... writes:

Reflex sympathetic dystrophy. The sympathetic nervous system turns on you and won't shut off. So it's like getting a bad burn on your arm and then it decides to spread where ever it chooses. I went from left shoulder/arm to full body. Some docs believe it to be in the same family as Lupus & MS. They changed the name about 2? years ago to Chronic Reigonal Pain Syndrome. Another one of those primarily female diseases that start with "your crazy" and end with "oh, it's such a rare disease". I'm lucky & have a great specialist in NY. I commute <G> I'm looking for a general doc down here.

Hugs

Judie

Ouch! That doesn't sound at all entertaining. I'll look it up this weekend, learn a little more about it. Last year the NYT did an article on autoimmune diseases (not the one I sent out this week) saying that the writer, at least, believes that all autoimmune diseases are differing manifestations of the same disorder. Keep in touch.

Harper

[Guest guest]

> Reflex sympathetic dystrophy. The sympathetic nervous system turns

on you and

> won't shut off. So it's like getting a bad burn on your arm and

then it

> decides to spread where ever it chooses. I went from left

shoulder/arm to

> full body. Some docs believe it to be in the same family as Lupus &

MS. They

> changed the name about 2? years ago to Chronic Reigonal Pain

Syndrome.

> Another one of those primarily female diseases that start

with " your crazy "

> and end with " oh, it's such a rare disease " . I'm lucky & have a

great

> specialist in NY. I commute <G> I'm looking for a general doc down

here.

>

> Hugs

> Just when I thought I'd heard 'em all, up comes another one. RSD--

I wonder if you would not think it pushy if I asked exactly what the

symptoms are and what is the treatment? And, just how rare is it? I

imagine very!!! But, I used to be told that AIH was rare and it

seems that more and more people are being diagnosed just on these web

sites alone. Imagine how many more might be walking around with it

and not know yet!!! And, it's scarey how autoimmune disease seems to

run in families to such an astonishing degree. Makes me worry about

my grandchildren--though if I were to warn them, they'd probably just

shrug it off at this point in their lives. Jean

> Judie

[Guest guest]

Yes, RSD is considered RARE..only rare because medical people do not know about it! No judgement ment....I'm one of them too and only one person I knew had ever heard of it. It was so rare that the day I was diagnosed with this extremely rare disease, I found a support group on Prodigy's Medical BB..........RSD & friends...it was awesome. One of the guys on the board fedex'd me a three inch stack of info on my "rare" disease. They spend more money & time deciding what to call it that they do figuring out how to cure it!

More of my saga later...........Hubby wants the phone!

Hugs Judie

[Guest guest]

A lot of the RSD literature intimate's the same. Only no one wants to claim this orphaned disease. Enough of that I'm here( hopefully) to gather info & be a support to my Dad also to learn about the support I need ( I'm good at giving & horrible at taking)

Hugs

Judie