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In a message dated 09/18/1999 5:00:51 AM Eastern Daylight Time,

spangs@... writes:

<< I'm wondering if any of you have had severe problems with leg pain and if

you know if there is a possible association with liver function? >>

Good Morning All,

This is interesting to me as I am awake at 4:30 am because of this very fact.

I get leg, feet and toe cramps that are unbelievably painful. I have always

attributed this to a lack of calcium from the diuretics I take. And when I

checked with my doctor she told me I needed to take potassium. That I do, it

helps some but not all the time as you can see. I also eat Bananas and

Asparagus which are rich in potassium. But to get instant relief I curl my

toes up, even placing them on the floor and bending my foot up. I was taught

to do this when I was in physical therapy after a car accident a few years

back. This really does help.

And Geri, don't worry about the long post, we are here for each other. I,

for one, need each and every one of you. Who understand us better then we do

or each other..LOL...did I say that right.

Have a good day, and remember...Laughter is the music of a happy heart, love

is it's sustenance. Sooooo...laugh a lot, it is healing.

Joni, AIH, PBC, HBP

Florida

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Geri,

I'm sorry that I do not know just what you are experiencing with your leg

pain, but I'm sure that you must have seen a rheumatologist by now. I get

leg pain, but mostly in the joints. However, sometimes my muscles feel like

I've really overdone it exercising, when I haven't done any exercise. You

are in my prayers.

Love

(AIH)

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Fortunately, I haven't had leg pains like you describe. I had cramps

before my diagnosis which was probably related to low potassium. I also

have some joint pains now since I stopped taking prednisone and have

reduced the Imuran from 100 mg per day to 75 mg.

Geri Spang wrote:

>

> From: Geri Spang <spangs@...>

>

> Hi Everyone,

> I'm wondering if any of you have had severe problems with leg pain and if

> you know if there is a possible association with liver function?

>

> I've had an increasing problem with leg weakness for to some degree for

> many years, from when I probably was having deteriorating liver function

> but wasn't yet diagnosed with AIH.

>

> Last year (July 1998) when it was quite severe I was tested from adrenal

> insufficiency since I'd just been weaned totally off Prednisone very

> rapidly. My adrenal function was low, so I was put back on 10 mgs. of pred

> and then weaned more slowly down to 5 mgs, where they now tell me I will

> continue at a minimum, for the rest of my life.

>

> Because of leg pain at the time, I was prescribed Vicoden to be taken once

> or twice daily, as needed.

>

> At 10 mgs. the pain let up but as pred was reduced, it returned. My doctor

> thought that the higher pred was masking the pain, not that the cause had

> been eliminated.

>

> The pain became tolerable but constant until I started taking Fosomax. It

> then became severe and I also had GI problems. I was switched to Miacalcin

> and had to stop it after a month because the pain became considerably worse

> than it had been in more than a year. I'm now taking nothing although I've

> had approximately 30% bone density loss in the past 2 years due to long

> term pred use. My doctor wants to take some " clean " blood tests then start

> me on Evista, which should be approved for bone mass replacement next

> month. (Now it's only approved to prevent bone density loss, or so I've

> been told.)

>

> The pain has reached the point where I can barely get around except for the

> few hours that Vicoden is effective. I feel it primarily in my calves and

> knees and it's a tingling, throbbing pain. My ankles and feet especially

> feel the tingling and throbbing when I'm lying down or sitting with my feet

> elevated and they also are achingly cold if I don't wear socks, but only

> when I'm sitting. I also have some lower back pain, almost like a muscle

> spasm.

>

> Vicoden brings almost remarkable relief within an hour. Something else

> that I think is unusual is that if I am sitting for a few hours in the

> evening, the pain in my legs basically goes away, but the longer I'm on my

> feet and the more I walk around, the worse it gets.

>

> There was an article in the Boston Globe (printed in the Las Vegas paper)

> about Peripheral Vascular Disease with a description of symptoms that sound

> remarkably like mine.

>

> The reason I'm asking if this relates to a poorly functioning liver is

> because I have 100% coverage for anything that might be related to a

> possible liver transplant. I only have 80% coverage, however, for

> hospitalizations and procedures done in a hospital other than one of those

> approved by our insurance companies Institutes of Quality, none of which

> are in Las Vegas. One of the ways they test for and treat the above

> disease is by angiogram and angioplasty.

>

> Sorry this is so long, but the pain is becoming almost intolerable. I can

> either struggle to make it through a day following normal routines or I can

> sit or lie down all day - and that's not something I'm ready for.

>

> Anyhow who knows anything about this, I'll really appreciate your input.

> I'm planning on also taking it up with my new doctor, but I don't see him

> for a couple of weeks. If the pain gets worse, I'll definitely see him

> sooner.

>

> Take care,

> Geri

>

>

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

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Fortunately, I haven't had leg pains like you describe. I had cramps

before my diagnosis which was probably related to low potassium. I also

have some joint pains now since I stopped taking prednisone and have

reduced the Imuran from 100 mg per day to 75 mg.

Geri Spang wrote:

>

> From: Geri Spang <spangs@...>

>

> Hi Everyone,

> I'm wondering if any of you have had severe problems with leg pain and if

> you know if there is a possible association with liver function?

>

> I've had an increasing problem with leg weakness for to some degree for

> many years, from when I probably was having deteriorating liver function

> but wasn't yet diagnosed with AIH.

>

> Last year (July 1998) when it was quite severe I was tested from adrenal

> insufficiency since I'd just been weaned totally off Prednisone very

> rapidly. My adrenal function was low, so I was put back on 10 mgs. of pred

> and then weaned more slowly down to 5 mgs, where they now tell me I will

> continue at a minimum, for the rest of my life.

>

> Because of leg pain at the time, I was prescribed Vicoden to be taken once

> or twice daily, as needed.

>

> At 10 mgs. the pain let up but as pred was reduced, it returned. My doctor

> thought that the higher pred was masking the pain, not that the cause had

> been eliminated.

>

> The pain became tolerable but constant until I started taking Fosomax. It

> then became severe and I also had GI problems. I was switched to Miacalcin

> and had to stop it after a month because the pain became considerably worse

> than it had been in more than a year. I'm now taking nothing although I've

> had approximately 30% bone density loss in the past 2 years due to long

> term pred use. My doctor wants to take some " clean " blood tests then start

> me on Evista, which should be approved for bone mass replacement next

> month. (Now it's only approved to prevent bone density loss, or so I've

> been told.)

>

> The pain has reached the point where I can barely get around except for the

> few hours that Vicoden is effective. I feel it primarily in my calves and

> knees and it's a tingling, throbbing pain. My ankles and feet especially

> feel the tingling and throbbing when I'm lying down or sitting with my feet

> elevated and they also are achingly cold if I don't wear socks, but only

> when I'm sitting. I also have some lower back pain, almost like a muscle

> spasm.

>

> Vicoden brings almost remarkable relief within an hour. Something else

> that I think is unusual is that if I am sitting for a few hours in the

> evening, the pain in my legs basically goes away, but the longer I'm on my

> feet and the more I walk around, the worse it gets.

>

> There was an article in the Boston Globe (printed in the Las Vegas paper)

> about Peripheral Vascular Disease with a description of symptoms that sound

> remarkably like mine.

>

> The reason I'm asking if this relates to a poorly functioning liver is

> because I have 100% coverage for anything that might be related to a

> possible liver transplant. I only have 80% coverage, however, for

> hospitalizations and procedures done in a hospital other than one of those

> approved by our insurance companies Institutes of Quality, none of which

> are in Las Vegas. One of the ways they test for and treat the above

> disease is by angiogram and angioplasty.

>

> Sorry this is so long, but the pain is becoming almost intolerable. I can

> either struggle to make it through a day following normal routines or I can

> sit or lie down all day - and that's not something I'm ready for.

>

> Anyhow who knows anything about this, I'll really appreciate your input.

> I'm planning on also taking it up with my new doctor, but I don't see him

> for a couple of weeks. If the pain gets worse, I'll definitely see him

> sooner.

>

> Take care,

> Geri

>

>

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

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Date: Sat, 18 Sep 1999 05:36:19 EDT

From: FOXDIANA@...

Subject: Re: Leg Pain

The leg pain I'm having isn't cramps, or at least nothing like cramps and

spasms I was getting from low potassium. I had a problem with cramps when

I first started taking diuretics 2 years ago, but my doctor switched me to

a potassium sparing diuretic (Ameloride, 4 - 5mg. tabs a day) and I also

take 40 mgs. of lasix daily. My Hepatologist said that one banana a day

will now prevent cramps. With cramps, they were there whether I was

sitting down, lying down or whatever and I could actually watch toes curl

under when I'd have one.

This is nothing like that. It's more of a constant, burning, painful

tingling. The longer I'm on my feet, the worse it gets until I feel like

my knees are going to buckle. The tingling never goes away in my feet and

they're like ice most of the time. Feels like it does when you've walked

in the snow without boots - nearly like frostbite!

I'm wondering how much of a circulatory or vascular problem might develop

with liver failure and if this might reflect the results of a long period

of poor circulation because of liver disease. The transplant doctors have

already identified what they think is a slight coronary blockage but I've

been resistant to an angiogram. I just wonder if anyone has read about

this type of problem developing due to liver disease and associated

vascular problems? I want to be " educated " when I see the doctor about it.

What kind of diuretic are you taking? If it's not potassium sparing

(slightly less effective for fluid retention than regular diuretics like

lasix), ask about Ameloride or Aldactone. But be careful about Aldactone.

Women, especially, sometimes have an unpleasant side effect of extreme

breast tenderness. If you don't have problems with severe edema and/or

ascites, they're excellent.

Take care,

Geri

PS: My Hepatologist told me that long term use of high doses of diuretics

like lasix can cause kidney damage.

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,

I've actually seen a couple of Rheumatologists about the leg and back pain.

One in Las Vegas where I live and one in La Jolla, California, where I was

evaluated for transplant. The issue was a little confused because I was in

pred withdrawal the first time and I tested positive for adrenal

insufficiency, which can cause extreme joint and muscle pain and fatigue.

The one in LV tested me yet again (yawn) for Lupus. Always negative.

I'm going to follow up with my doctor, definitely. I guess I was assuming

that just about everyone was going through the same thing or had at some

point, due to liver disease. What you describe that you feel sounds

similar to what I feel except mine is all of the time, every day, and is

becoming severe enough to be almost debilitating. I do tend to stay very

busy and to ignore physical pain and limitations until I've overdone

things. I keep trying to do all of the things I did when I was 30 years

younger and disgustingly healthy.

Take care,

Geri

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Barbara,

My potassium always tests within normal levels. I think it has for almost

2 years, probably thanks to Ameloride and lasix. The cramps are painful

and startling as I recall and I was so relieved to get rid of them. Haven't

had a problem with cramps for more than a year.

I guess it's normal to have at least some muscle and joint pain when

Prednisone is reduced or stopped. I've stayed at 5 mgs. of pred since June

and the pain is actually worse, day by day, not better, so withdrawal

probably isn't the cause. It seems to have been aggravated since I took

Fosomax then Miacalcin, but both should be out of my system by now and I

didn't take either for very long.

Take care,

Geri

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----------

>Geri,

I have the leg pain also. Knees and ankles mainly. When I asked my doc she

said it could be from the diabetes (which I have because of the pred).

Nothing I can do, she said. Except take the pain relief. That, to me is

dreadful, masking the symptoms not addressing the problem.

As far as the muscle spasms in the lower back. I posted a couple of months

ago about these. They just pull me up in my tracks whenever and where ever

I am. Cannot move or even breath deep until it passes. It only lasts a

short while but it is unreal when it hits. I do sympathise with you. Again

I asked my doc and she doesn't know, but was making some enquires, I see

her again in two weeks, I'll ask again. I hope it eases for you soon. Good

luck with the new doc.

SueB.

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Geri,

The leg pain is probably also due to AIH, I looked it up and here is the link:

<A

HREF= " http://webseek.merck.com/query.html?qt=vasculitis & qp=site%3Awww.merck.co

m " >Click here: Search Results for 'vasculitis'</A> , this is from the online

Merck Manual. I have this manual at home and it is great for looking up

stuff. Their main page is at: <A HREF= " http://www.merck.com/ " >Click here:

Merck Homepage</A> This is a resource that doctors use too. All you ever

wanted to know about health - LOL. Good luck honey!

Love

(AIH)

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----------

Geri,

When I get the pain in the legs and feet, I cannot stand still for very

long. If I do it is worse, moving from foot to foot at least helps. When

you get some answers, I love to hear them. Mine is not cramps.

SueB.

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No results on that site

J

>From: La7de@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Leg Pain

>Date: Sun, 19 Sep 1999 11:52:27 EDT

>MIME-Version: 1.0

>From errors-165537-6817-shireen42 Sun Sep 19 08:51:21 1999

>Received: from [209.207.164.205] by hotmail.com (2.1) with ESMTP id

>MHotMailB9AE51780184D820F396D1CFA4CD51990; Sun Sep 19 08:51:21 1999

>Received: (qmail 168 invoked by alias); 19 Sep 1999 15:52:13 -0000

>Received: (qmail 163 invoked from network); 19 Sep 1999 15:52:12 -0000

>Received: from unknown (HELO imo12.mx.aol.com) (198.81.17.2) by

>pop.onelist.com with SMTP; 19 Sep 1999 15:52:12 -0000

>Received: from La7de@... by imo12.mx.aol.com (mail_out_v22.4.) id

>hTKa003913 (4587) for < onelist>; Sun, 19 Sep 1999

>11:52:27 -0400 (EDT)

>Message-ID: <87e5865b.251660bb@...>

>X-Mailer: AOL 4.0 for Windows 95 sub 27

>Mailing-List: list onelist; contact

> -owneronelist

>Delivered-mailing list onelist

>Precedence: bulk

>List-Unsubscribe: <mailto: -unsubscribeONElist>

>

>From: La7de@...

>

>Geri,

>

>The leg pain is probably also due to AIH, I looked it up and here is the

>link:

><A

>HREF= " http://webseek.merck.com/query.html?qt=vasculitis & qp=site%3Awww.merck.co

>m " >Click here: Search Results for 'vasculitis'</A> , this is from the

>online

>Merck Manual. I have this manual at home and it is great for looking up

>stuff. Their main page is at: <A HREF= " http://www.merck.com/ " >Click

>here:

>Merck Homepage</A> This is a resource that doctors use too. All you ever

>wanted to know about health - LOL. Good luck honey!

>

>Love

> (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

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I got in from Merck , but not sure which page you are meaning.

J

>From: La7de@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Leg Pain

>Date: Sun, 19 Sep 1999 11:52:27 EDT

>MIME-Version: 1.0

>From errors-165537-6817-shireen42 Sun Sep 19 08:51:21 1999

>Received: from [209.207.164.205] by hotmail.com (2.1) with ESMTP id

>MHotMailB9AE51780184D820F396D1CFA4CD51990; Sun Sep 19 08:51:21 1999

>Received: (qmail 168 invoked by alias); 19 Sep 1999 15:52:13 -0000

>Received: (qmail 163 invoked from network); 19 Sep 1999 15:52:12 -0000

>Received: from unknown (HELO imo12.mx.aol.com) (198.81.17.2) by

>pop.onelist.com with SMTP; 19 Sep 1999 15:52:12 -0000

>Received: from La7de@... by imo12.mx.aol.com (mail_out_v22.4.) id

>hTKa003913 (4587) for < onelist>; Sun, 19 Sep 1999

>11:52:27 -0400 (EDT)

>Message-ID: <87e5865b.251660bb@...>

>X-Mailer: AOL 4.0 for Windows 95 sub 27

>Mailing-List: list onelist; contact

> -owneronelist

>Delivered-mailing list onelist

>Precedence: bulk

>List-Unsubscribe: <mailto: -unsubscribeONElist>

>

>From: La7de@...

>

>Geri,

>

>The leg pain is probably also due to AIH, I looked it up and here is the

>link:

><A

>HREF= " http://webseek.merck.com/query.html?qt=vasculitis & qp=site%3Awww.merck.co

>m " >Click here: Search Results for 'vasculitis'</A> , this is from the

>online

>Merck Manual. I have this manual at home and it is great for looking up

>stuff. Their main page is at: <A HREF= " http://www.merck.com/ " >Click

>here:

>Merck Homepage</A> This is a resource that doctors use too. All you ever

>wanted to know about health - LOL. Good luck honey!

>

>Love

> (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

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J,

It worked for me. If you can't get to the vasulitis site, then click on the

Merck Manual link and go from there.

(AIH)

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

No results on that site

J

>From: La7de@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Leg Pain

>Date: Sun, 19 Sep 1999 11:52:27 EDT

>MIME-Version: 1.0

>From errors-165537-6817-shireen42 Sun Sep 19 08:51:21 1999

>Received: from [209.207.164.205] by hotmail.com (2.1) with ESMTP id

>MHotMailB9AE51780184D820F396D1CFA4CD51990; Sun Sep 19 08:51:21 1999

>Received: (qmail 168 invoked by alias); 19 Sep 1999 15:52:13 -0000

>Received: (qmail 163 invoked from network); 19 Sep 1999 15:52:12 -0000

>Received: from unknown (HELO imo12.mx.aol.com) (198.81.17.2) by

>pop.onelist.com with SMTP; 19 Sep 1999 15:52:12 -0000

>Received: from La7de@... by imo12.mx.aol.com (mail_out_v22.4.) id

>hTKa003913 (4587) for < onelist>; Sun, 19 Sep 1999

>11:52:27 -0400 (EDT)

>Message-ID: <87e5865b.251660bb@...>

>X-Mailer: AOL 4.0 for Windows 95 sub 27

>Mailing-List: list onelist; contact

> -owneronelist

>Delivered-mailing list onelist

>Precedence: bulk

>List-Unsubscribe: <mailto: -unsubscribeONElist>

>

>From: La7de@...

>

>Geri,

>

>The leg pain is probably also due to AIH, I looked it up and here is the

>link:

><A

>HREF= " http://webseek.merck.com/query.html?qt=vasculitis & qp=site%3Awww.merck.co

>m " >Click here: Search Results for 'vasculitis'</A> , this is from the

>online

>Merck Manual. I have this manual at home and it is great for looking up

>stuff. Their main page is at: <A HREF= " http://www.merck.com/ " >Click

>here:

>Merck Homepage</A> This is a resource that doctors use too. All you ever

>wanted to know about health - LOL. Good luck honey!

>

>Love

> (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

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

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Good Morning Geri,

Are you receiving the digest form of the list yet. I hope that has gotten

resolved.

I take Aldactone for edema. If the retention gets real bad I have to take 40

mg of Lasix. And my breast are very tender and sensitive, but I can live

with that.

When you were talking about the cold feeling in your feet, the tingling, I

thought of circulatory or vascular. Have you had your blood ogygen checked,

that can cause coldness. And do your toenails have a blue cast to them? I

have a lot of links on my site about the Liver and AIH. I will send them at

the bottom of this letter.

I agree with you about going to the doctor armed. I have learned so much

from everyone on this list and made a list, checking it twice, gonna find out

why the doctor was naughty but nice and forgot to tell me most of

it..LOL...(Gotta keep the sense of humor here).

There are 4 types of Cirrhosis. And I don't know much more about any of them

but am searching. AND I AM NOT SAYING YOU WILL GET CIRRHOSIS IF YOU HAVE

THESE DISEASES.

Hepatatic - caused by Hepatitis A, B, C, and AIH

Diabetic - caused by advanced diabeties

Cardiac - caused by heart problems

Alcoholic - caused by excessive drinking

When the doctor told me I had AIH and PBC, the words flew out of my mouth. I

am not a heavy drinker, I drink maybe once a year if then even. She told me

about the 4 types. After 1 year of testing, a liver scan, a liver ultra

sound, left heart catherization, liver biopsy, more blood work then I have

ever had in my entire life, other test that I can't remember the names, I was

told what I have. That these were not one but two life threatening

diseases, not given much hope for a future . That in it self gave me the

fight I need to fight this, the will to live was the other. She told me not

to eat Shellfish or bottom dwelling fish, never drink again, and do not take

Tylenol. My oldest daughter was with me, she told the doctor, You don't know

who you are talking to, she will live just to bug the " hell " out of us all.

Well, 3 years later, taking 57 pills a day, not eatting fish at all, not

drinking, and no tylenol, I feel good, my counts are coming down slowly, and

I am happy to be alive.

Have a good day, and remember...Laughter is the music of a happy heart, love

is it's sustenance. Sooooo...laugh a lot, it is healing.

Joni, AIH, PBC, HBP

Florida

Links

A Liver of Empathy

http://www.insidetheweb.com/messageboard/mbs.cgi?acct=mbmc00989

AARDA

http://www.aarda.org/index.html " >http://www.aarda.org/index.html

Alternative Hope For Hep C

http://alternativehopeforhepc.com/

American Liver Foundation

http://www.liverfoundation.org/

Rinaldi's Hepatitis Home Page

http://www.geocities.com/HotSprings/3982/

Ask Dr. Weil

http://www.hotwired.com/drweil/

Autoimmune Disease The Facts

http://www.4women.org/owh/pub/autoimmune/autoimmfacts.htm

Autoimmune Hepatitis

http://cpmcnet.columbia.edu/dept/gi/autoimmune.html

Chronic active hepatitis - Overview

http://www.adam.com/ency/article/000271.htm

Chronic Autoimmune Liver Diseases

http://hometown.aol.com/pbcers/liverdis.htm

Etiologic Classification of Chronic Hepatitis and Chronic Biliary Diseases

http://tpis.upmc.edu/tpis/schema/LChrClas.html

FDA Approves Primary Biliary Cirrhosis Treatment

http://www.pslgroup.com/dg/4d956.htm

HealthAnswers Medical Reference Library - Liver disease

http://healthanswers.com/adam/top/view.asp?filename=000205.htm & rdir

HealthCentral - General Encyclopedia - Liver disease

http://www.healthcentral.com/mhc/top/000205.cfm

HealthWave Autoimmune Diseases

http://www.healthwave.com/healthwave/Diseases-and-Disorders/For-Health-and-

Medical-Professionals/Immunologic-Diseases/HW-Autoimmune-Diseases.html

HealthWeb Consumer Health Liver Diseases

http://www.uic.edu/depts/lib/health/hw/consumer/liver.html

HealthWorld - MEDLINE Search

http://www.healthy.net/Library/search/medline.htm

Hepatico

http://www.hepatico.com/medical.htm

Hepatitis C

http://www.concordemed.com/Hepatology/Hepatitis C.htm

Hepatitis Central, Autoimmune Hepatitis, Hepatic Fibrosis, CAH, AIH,

Prednisone

http://hepatitis-central.com/hcv/autoimmune/toc.html

Hepatitis Central, Cirrhosis, Many Causes

http://www.hepatitis-central.com/hcv/liver/causes.html

Hepatitis Central, Current Information On Hepatitis C, Rebetron, Interferon,

Ge

http://hepatitis-central.com/hcv/maintoc.html

Hepatitis Central, Hepatitis Homepages

http://www.hepatitis-central.com/hcv/hepatitis/homepages.html

Hepatitis Links

http://www.john.kirk.mcmail.com/hep.htm

Hepatitis Weekly

http://www.newsfile.com/x1h.htm

HepWeb

http://nav.webring.com/cgi-bin/navcgi?ring=hepweb;list

http://cpmcnet.columbia.edu/dept/gi/disliv.html

http://ex.as.lancenet.or.jp/heppers/biop-19.html

http://www.gastro.com/liverpg/livdz.htm

Life Extension Magazine September 1998

http://www.lef.org/magazine/mag98/sep98_hepc.html

LIVER CIRRHOSIS - DISEASE THERAPY PROTOCOL

http://www.lef.org/protocols/prtcl-068.shtml

Lycos HEALTH beta Guide Hepatitis

http://a2z.srv.lycos.com/wguide/wire/wire_385880957_90495_3_1.html

Mayo Health Oasis

http://www.mayo.ivi.com/

OnHealth Follow Up - Hepatitis C

http://onhealth.com/ch1/in-depth/item/item,34421_1_1.asp

OnHealth Hepatitis

http://onhealthnetworkcompany.com/ch1/resource/conditions/item,363.asp

Primary Biliary Cirrhosis

http://members.tripod.com/enotes/pbc.htm

Support, Advocacy, and Educational Groups & Resources

http://www.transweb.org/people/recips/resources/support_index.htm

The AnswerSleuth's Autoimmune Diseases

http://answersleuth.com/health/diseases/autoimmune_diseases.shtml

The Hepatitis Webring

http://nav.webring.com/cgi-bin/navcgi?ring=hepring;list;page=1

The Immune Response Corporation - Research Programs and Technologies

http://www.imnr.com/tech.htm

The National Hepatitis C Coalition online

http://nationalhepatitis-c.org/

Transplant Internet site launched

http://news.excite.com/news/r/990909/17/health-uno18

What is autoimmune hepatitis--thrive@health

http://www.thrive.net/health/experts/bill/bill.08-11-97.html

Medical Matrix

http://www.slackinc.com/matrix/

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Janelle,

Like everything else related to liver disease, you never know what just

goes with the program and what you have to worry about. Things that I

would have shrugged off a few years ago now worry me because it's always

hanging over my head that there can be complications that could become a

serious problem.

I'd like to be able to set aside the leg problem but it's been really

debilitating the past week. Not every day, though, which is strange.

Yesterday was more like it used to be - tolerable - but today it was worse

again. I've had the leg weakness for years and I've also had undiagnosed

AIH for years, or so my doctors suspect. I used to be able to walk for

hours and never get tired, yet I couldn't walk up two flights of stairs

without gasping for breath. Now, I can't walk across a room without

gasping for breath. I've had every kind of respiratory test known to

medical science, and more than once, and they can't find anything wrong

with my lungs so they want to rule out a heart problem - apparently only

possible through angiogram. Some kind of " glitch " showed up on my exercise

EKG but they need more info.

I really don't react much to pain. In fact, I forget to tell even my

husband about it when something's hurting, let alone my doctors. So, I

can't really blame my doctors for not trying to find out what's causing the

leg pain since I haven't mentioned it to them for more than a year until I

experienced an increase while I was taking Miacalcin. Now, I'm not taking

Miacalcin or Fosomax since both caused negative side effects. Tomorrow

I'll start on Evista and hope at least it checks the progress of Prednisone

induced osteoporosis.

For what it was worth, 10 mgs. of Prednisone with one Vicoden a day just

about eliminated the pain last year. Now, it's important that I take as

little Prednisone as necessary to prevent a relapse because of very rapid

bone density loss. Vicoden doesn't get rid of the pain but it makes it

tolerable and I can go about my day somewhat normally. I hate feeling

foggy headed and I don't know that I'd want to take anything stronger.

I wonder what causes the pain specifically in the knees? That's where mine

is usually worst. The past few weeks, one hip bothers me off and on but I

can usually live with that. I really do believe that everything happens

for a reason and I'm never satisfied to hear that something just goes with

a condition. I want to know the physical process that causes it to happen.

However, I worry when it's clear that even some doctors don't know the causes.

I guess I'll have to live with the pain if the cause can't be isolated, but

I won't be satisfied until I find out exactly what is making it happen!

Take care,

Geri

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  • 1 month later...

I get leg cramps, too, in both legs ( & my feet,

as well). It happens during the day sometimes (often

while I'm driving, which scares me), but mostly at

night. I did some research online & found there's

actually a name for it--Restless Legs Syndrome--but I

don't know if there's a cure for it.<br><br>Good luck

at the doctor's! Let us know what s/he says about

the cramps!<br><br>Take care,<br>

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  • 6 months later...
Guest guest

In a message dated 5/20/00 7:13:47 PM Eastern Daylight Time,

lil_ones@... writes:

<< My three year old daughter with Achondroplasia has been complaining about

her lower legs hurting her the last couple of days. >>

I have Achondroplasia too and since I was a child my legs would hurt me from

walking. My parents would use rubbing alcohol on them to help. As I got

older I try and take it easy with walking, wear comfortable sneakers and take

foot baths.

Helen

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Guest guest

Dear Amy,

Yes, it is normal for our children to experience leg pain, an aching. It is

common at night, often helped by rubbing the shin bone and calf muscles. It can

be particularly bad once they start school. The first few months of school,

trying to keep up were particularly bad. I have even needed to use a mild pain

relief in order to settle my son back to sleep.

I have asked the 'experts' (mostly, Greenberg experts) and been told it is

probably a ligament/tendon thing and nothing permanent or serious. But, yes,

normal for Achondroplasia as most of us parents will tell you.

Take care,

Katy Sinclair, Liaison Officer

Little People of New Zealand

108 Mayfair Avenue, Hastings

Tel/Fax 06 878 7506

katy.sinclair@...

leg pain

Hello All,

My three year old daughter with Achondroplasia has been complaining about

her lower legs hurting her the last couple of days. I see no reason on the

outside for them to hurt, so I am assuming it is an aching, and she says is

feels good when I rub them.

Are these leg pains normal for this condition??

Thanks,

Joanie

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  • 2 months later...
Guest guest

I am experiencing moderate to sometimes severe " burning " pain in my legs,

mainly in my calves. I have started a light exercise program and have taken

more calcium/magnesium and also take a malic acid combo from the Chronic

Fatigue Association. I was wondering about whether or not I may be " toxic " .

I seem to be more sensitive than the " normal " person and maybe if I am, it

is causing the burning pain. I also seem to hurt wherever I have lymph

glands. Is this toxic condition a real condition, and if so, how can I help

my body cleanse itself and help out my liver? Any help would be greatly

appreciated !

KAT

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Guest guest

KATlady,

Have you had a massage lately? This year? This lifetime? Sounds like your lymph

is backed up & you need one before you can begin to wonder what is bothering

your body.

WHen I learned acupressure & kinesiology I thought they were so neat, you can

figure out exactly what the body is complaining about! Then, with lymphatic

fluid release massage I discovered that 1/2 to 2/3 of physical symptoms

disappear after a good massage. So, all I have to do after giving a massage is

determine what is bothering the person I am massaging from the symptoms that

remain. This is a less daunting task.

Besides, nothing feels better than a good massage, it can't hurt and..... don't

you deserve a reward?! ;-)

jim :)

Angelkat wrote:

> I am experiencing moderate to sometimes severe " burning " pain in my legs,

> mainly in my calves. I have started a light exercise program and have taken

> more calcium/magnesium and also take a malic acid combo from the Chronic

> Fatigue Association. I was wondering about whether or not I may be " toxic " .

> I seem to be more sensitive than the " normal " person and maybe if I am, it

> is causing the burning pain. I also seem to hurt wherever I have lymph

> glands. Is this toxic condition a real condition, and if so, how can I help

> my body cleanse itself and help out my liver? Any help would be greatly

> appreciated !

> KAT

>

>

>

> OxyPLUS is an unmoderated e-ring dealing with oxidative therapies, and other

alternative self- help subjects.

>

> THERE IS NO MEDICAL ADVICE HERE!

>

> This list is the 1st Amendment in action. The things you will find here are

for information and research purposes only. We are people sharing information

we believe in. If you act on ideas found here, you do so at your own risk.

Self-help requires intelligence, common sense, and the ability to take

responsibility for your own actions. By joining the list you agree to hold

yourself FULLY responsible FOR yourself. Do not use any ideas found here

without consulting a medical professional, unless you are a researcher or health

care provider.

>

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address - NOT TO THE OXYPLUS LIST! -

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--

" Coming events cast their shadows before. " --

jlambert@... http://www.entrance.to/madscience

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  • 2 months later...

I don't know why either, but would like to know. I wake up in the middle of the night with severe pain in my hand and it shouts up my arm, and it also goes numb and swells up sometimes. It hurts during the day, but much worse when I lay down. Kim S. in N.Y.

pepi <rod@...> wrote:

K, Y'all enlighten me, I know this has been discussed a million times but why do we get that da** nerve/bone pain at night? why doesnt it hit during the day? For me, I can sleep ( sometimes ) untill exactly 1am, then it wakes me up just about everynight. I know this is all a repeat, but I really cant remember why. TYIA PepiMany thanks to our founder and friend, Marta McCoy, for making the support group it is today.Easy Reference:Send a blank email message to: -Subscribeegroups - Subscribe to the list through email -Unsubscribeegroups - Unsubscribe from the list -Digestegroups - Switch your subscription to a digest format -Normalegroups - Switch your subscription to normalPlease send messages not related to Lyme disease to -OfftopicegroupsArchives can be accessed at lyme-aidPlease visit the sister site athttp://clubs./clubs/lymeaidThis is the primary chat site for .HAVE A GREAT DAY,kimsak2000@...

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> K, Y'all enlighten me, I know this has been discussed a million

times but why do we get that da** nerve/bone pain at night? why

doesnt it hit during the day? For me, I can sleep ( sometimes )

untill exactly 1am, then it wakes me up just about everynight. I know

this is all a repeat, but I really cant remember why. TYIA Pepi

Hey Pepi,

I too have leg pain (primarily in the muscles, sometimes in the bone)

usually at night near bedtime, but now also in the morning when I

wake, and off an on during the day. I've had restless leg, where it

jumps around as I fall asleep, too.

I have had insomnia from it all, but not for awhile, thankfully.

Be good, Jim

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I too have leg pain and restless legs at night -- often can't fall asleep or

it wakes me up. I do find that if I remember to take a strong

calcium/magnesium tab before bedtime I have less trouble with legs. Trouble

is, I often forget! (I'd better go take one right now...) --charlotte in

vermont

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  • 5 months later...
Guest guest

Sounds like Piriformis Syndrome-see a good PT, ATC or LMT

T.Herrick,MD,FAAOS,FACS,FICS,FACSM,ASSH

Herrick Orthopaedic Clinic

POBox 4160

Opelika,AL 36803-4160

USA

-----Original Message-----

From: raelsixty4@... [mailto:raelsixty4@...]

A question:

What have I pulled/pinched to have extremely intense pain from just

the top of my right glute, moving downwards, curving around, down

through/over my front thigh, ending at the top of my knee? I've

pulled muscles before, but this is some wicked pain. I think the

injury occured someplace between deadlifts, SLDLs, and squats.

Diagnosis? Advice?

Gracias...

Rael / don mutchler

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