me again

[Guest guest]

In a message dated 10/27/1999 8:29:15 AM Eastern Daylight Time,

ferraroa@... writes:

> The ABC address I sent takes you to an online email form, where you can

> choose which show you want to email. Some of the shows are:

> 20/20

> World News Tonight

> Nightline

> Good Morning America

> This Week,

Again, fax numbers?

[Guest guest]

Carolyn,

The ABC address I sent takes you to an online email form, where you can

choose which show you want to email. Some of the shows are:

20/20

World News Tonight

Nightline

Good Morning America

This Week,

and more

>From: skidrowe@...

>

>Hi all,

>

>I've already started compiling some e-mail addresses for talk shows

>and news shows. I have found a few of them but some are being difficult.

>Some of them might require going to the web site and e-mailing from there

>which really isn't too difficult, but I will continue trying to find the

>exact e-mail addresses. Good idea about Ann Landers and Dear Abby!! I

>really believe that if they get these in masses they will raise an eyebrow

>and want to know what the scoop is! Maybe some of you have found e-mail

>addresses that I haven't found yet. These are the ones I'm looking for:

>

>FOUND: NIGHTLINE niteline@...

> DATELINE dateline@...

> TODAY SHOW today@...

> MEET THE PRESS mtp@...

>

>LOOKING FOR: 20/20

> MONTEL WILLIAMS

> OPRAH

> LEEZA

> SALLY JESSE RAPHAEL

> GOOD MORNING AMERICA & GMA SUNDAY

> MAURY POVICH

> THIS MORNING

> LATER TODAY

> CROSSTALK

> 48 HRS

> 60 MINUTES & 60 MINUTES II

> DEAR ABBY

> ANN LANDERS

>

>Some of you may have others as well. IF I can help find those let me know.

>Can you even imagine what could happen if we made even just 2 of them?! I

>think we could bust this thing wide open! That's why it's so important that

>we ALL do it and do it on the same day, it will make a very big impact I

think.

>I'm not sure they read them all but with all of us doing it I'm sure

they'll

>wind up reading several. Finger tapping your rep is a good idea too! I also

>want you all to know that I do know that lousy care of Lyme is not just in

the

>military!!!!! I have read the horror stories from all walks of life. It's

time

>to kick some bootie!! May sounds like a good month for joining in

demonstration!

>Nobody is going to do this for us so let's get up and do it for ourselves!!

>

>Carolyn

>

>

>>Send to -Offtopiconelist messages unrelated to lyme, please.

>/archive/lyme-aid

>/archives.cgi/Lyme-Documents

>To unsubscribe, send email to -unsubscribeonelist

>You may substitute " subscribe " , or " digest " or " normal " for

>the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

>

[Guest guest]

Hello New Jersey,

I too am from New Jersey and am also in my 20's. I'm turning 28 next week

and I think I first started with PA around your age just didn't know what it

was. You must remember that this is not going to kill you and there is

treatment they may not take it away completely but, it will help you to get

out of bed in the morning without having to need a couple of hours to

unstiffen. There are many nice people who are great to talk to and know have

becomes friends. You've already spoken to one of the nicest Jayne from New

Jersey too. Just remember your not alone. Where I work people always said

what's wrong with you a fight or something? And I used to reply I wish or

you should see the other girl. But, I realized I didn't get better and they

would just keep asking. So tell people the truth and it will help you to

deal with this. When people know say your too young for Arthritis I say well

I look at it this way I saved one old person from getting it.

Well feel better

Gioia

[Guest guest]

>>>>>> When people know say your too young for Arthritis I say

well

I look at it this way I saved one old person from getting it.

Well feel better

Gioia<<<<<<

Hello,

I would like to add to what has said by saying that many of

us on this list had P and PA in our teens and twenties but did

not get a proper diagnosis or treatment. I went to several

different doctors trying to find out why I was having so many

problems. I spent my early twenties looking for an answer and

never got one. I had panic attacks so severe that I was taken to

the hospital in an ambulance because I thought for sure I was

dying. I am so grateful I do not have those panic attacks any

more. They are disabling.

I had the pain and swelling in my joints when I was young. The

doctors never considered looking too far into my complaints even

though I had psoriasis up and down my legs and they were

infected. Not once did they try to find out what was going on.

(It took my hair falling out like crazy to finally get some

action!) They said it was all in my head. I was actually sent

to a Psychologist! He did not help my symptoms at all of course!

(But he did help me with a mother in law that is not so nice )

When doctors can not find an obvious reason for a young woman's

complaints they just assume there is a mental thing going on.

They told me I was a nervous young mother. It really was

insulting.

Life can throw a curve ball at any time. I have two children who

have Down syndrome. The struggles and challenges in life they

will face will make P an PA look like easy. They are at risk for

many different diseases and life threatening conditions including

Alzheimer's at an early age. Some develop Alzheimer's in their

early 20's.

P and PA are certainly a serious disease but I try to look at the

whole picture - It is rarely deadly, there are treatments that

seem to be effective, by the time I am 56 (twenty years from now)

there could be a cure. There will surely be more options as far

as treatments and they will probably be safer than the ones we

have now. Many people like my children do not have that to look

forward too. I just keep reminding myself that things could be

much worse! No matter what is going on in your life at any given

time there is probably somebody else with something much worse!

Lee Ann

[Guest guest]

Hi Lee Ann

You are so right, you could be my sister!

Yes I think I almost ended up deranged trying to figure out if my symptoms

were real, or psychological.

Having endured a few episodes of swollen joints while married, they were

dismissed by my GP as " You MUST have knock it? " Then after my divorce, when

the toe became inflamed, my GP was like a headless chicken, and " I " was

panicking! As for a reason? As a wife, my husband would be classed as the

main bread winner. As a divorcee, I had to support myself! So it was only

then did they pull all the stops out, by which time I guess it was too late,

the disease had taken a firm hold.

Yes it could be worse, having observed all my fathers family die from

Cancer, at least arthritis is not deadly. Having spent a period wheelchair

bound, no way do I want to go back to wheels. Yes everyday I see people

worse off than me and am thankfully that my lot is so small in comparison!

Love and God Bless

Gillian

[Guest guest]

Hi Gillian.

Did you feel that you did not get the proper attention because

you were a young woman? When I was in my twenties I had some bad

experiences with 40ish male doctors. I guess they just assumed

that I should not have any medical problems because I LOOKED

healthy. I really wanted to be healthy. That was why I was

there in their office looking for an answer. I do not know if

things are any better now for women in their twenties. I have

found a wonderful doctor. He is about my age and actually

listens to me. I still have a few things I have not told him.

Like I have a very difficult time with restless legs in the

evening. I can not sit down and watch TV very long. Sometimes I

just have to go to bed to get some relief. I do not know if I am

having problems at night but I do wake up often. I also have

times where I feel like something is shocking me in my feet and

legs especially, sometimes my hands and my neck. I also get

muscle spasms in my neck and chin. I think it may be a

neurological problem but I am not ready to deal with it yet. I

know I had lead poisoning when I was young and I have wondered if

there was a connection. I do need to tell my doctor about it but

I just don't want to give him so much that he thinks I am a

Hypochondriac! I just yesterday told him about my terrible dry

mouth and eyes that hurt. I feel like I have been in the desert.

I think there is just a misbelieve out there that only " old "

people get these things. It seems to me that more and more young

people are having problems. I belong to a support group for

parents of children with Down Syndrome and there is some belief

out there that the childhood vaccinations we are required to give

our children are causing some of these problems. My children are

all vaccinated. I would not want to start with a newborn knowing

what I do now.

Lee Ann

[Guest guest]

Been there! Done that! This mess started on me when I was 5 and they said

it was rheumatoid arthritis but I didn't have the blood tag that would prove

it. It wasn't until I was 29 and had major surgery and busted out all over

that they realized what I really had. Then about 3 years ago the arthritis

got so bad I had to start with the rheumy. And that's my history. At 53

and I am going to accept the fact that I have a disability and try to change

my lifestyle so that I can live within the guidelines and still accomplish

whatever God wants of me. So there Satan, that's my answer to your physical

disability!

Peace

Helen

> RE: [ ] Me again

>

>

> From: " Lee Ann Walter " <SAWalter@...>

>

> Hi Gillian.

> Did you feel that you did not get the proper attention because

> you were a young woman? When I was in my twenties I had some bad

> experiences with 40ish male doctors. I guess they just assumed

> that I should not have any medical problems because I LOOKED

> healthy. I really wanted to be healthy. That was why I was

> there in their office looking for an answer. I do not know if

> things are any better now for women in their twenties. I have

> found a wonderful doctor. He is about my age and actually

> listens to me. I still have a few things I have not told him.

> Like I have a very difficult time with restless legs in the

> evening. I can not sit down and watch TV very long. Sometimes I

> just have to go to bed to get some relief. I do not know if I am

> having problems at night but I do wake up often. I also have

> times where I feel like something is shocking me in my feet and

> legs especially, sometimes my hands and my neck. I also get

> muscle spasms in my neck and chin. I think it may be a

> neurological problem but I am not ready to deal with it yet. I

> know I had lead poisoning when I was young and I have wondered if

> there was a connection. I do need to tell my doctor about it but

> I just don't want to give him so much that he thinks I am a

> Hypochondriac! I just yesterday told him about my terrible dry

> mouth and eyes that hurt. I feel like I have been in the desert.

>

> I think there is just a misbelieve out there that only " old "

> people get these things. It seems to me that more and more young

> people are having problems. I belong to a support group for

> parents of children with Down Syndrome and there is some belief

> out there that the childhood vaccinations we are required to give

> our children are causing some of these problems. My children are

> all vaccinated. I would not want to start with a newborn knowing

> what I do now.

>

> Lee Ann

>

> > Please visit our new web page at:

> http://www.wpunj.edu/icip/pa

>

[Guest guest]

Hi Lee Ann,

I know what you mean about the " restless legs " and the dry mouth. I had

that once, but can't remember what meds I was on at the time. I think I've

tried them all. I would wake up at night and my tongue would be stuck to

the roof of my mouth like it was attached with " Super Glue. " These symptoms

went away and I never did know what caused it. I had even asked the doctor

about it. I do know that if I stay away from caffeine, especially from

around noon till I go to bed, I sleep better and don't feel so hyper at

night.

I know what you mean about the shocking feelings. I don't have muscle

spasms, but get that shocking feeling, and mine runs up the back of my

neck. It's there but doesn't bother me enough to worry about it. I'm like

you...........I feel if I were to mention every little symptom to my doctor

he would look at me as if I were " nuts. "

I used to get large itchy welts on different areas of my body and when I

mentioned this to my doctor, he didn't know what caused that either. Those

symptoms went away and I didn't change meds or anything.

Vicki

Lee Ann Walter wrote:

> From: " Lee Ann Walter " <SAWalter@...>

>

> Hi Gillian.

> Did you feel that you did not get the proper attention because

> you were a young woman? When I was in my twenties I had some bad

> experiences with 40ish male doctors. I guess they just assumed

> that I should not have any medical problems because I LOOKED

> healthy. I really wanted to be healthy. That was why I was

> there in their office looking for an answer. I do not know if

> things are any better now for women in their twenties. I have

> found a wonderful doctor. He is about my age and actually

> listens to me. I still have a few things I have not told him.

> Like I have a very difficult time with restless legs in the

> evening. I can not sit down and watch TV very long. Sometimes I

> just have to go to bed to get some relief. I do not know if I am

> having problems at night but I do wake up often. I also have

> times where I feel like something is shocking me in my feet and

> legs especially, sometimes my hands and my neck. I also get

> muscle spasms in my neck and chin. I think it may be a

> neurological problem but I am not ready to deal with it yet. I

> know I had lead poisoning when I was young and I have wondered if

> there was a connection. I do need to tell my doctor about it but

> I just don't want to give him so much that he thinks I am a

> Hypochondriac! I just yesterday told him about my terrible dry

> mouth and eyes that hurt. I feel like I have been in the desert.

>

> I think there is just a misbelieve out there that only " old "

> people get these things. It seems to me that more and more young

> people are having problems. I belong to a support group for

> parents of children with Down Syndrome and there is some belief

> out there that the childhood vaccinations we are required to give

> our children are causing some of these problems. My children are

> all vaccinated. I would not want to start with a newborn knowing

> what I do now.

>

> Lee Ann

>

> > Please visit our new web page at:

> http://www.wpunj.edu/icip/pa

[Guest guest]

Hi Vicki,

I think we really do risk our credibility if we are too honest

about our symptoms. I am lucky enough to have a doctor that asks

me if there are any other problems he should know about. I think

he can tell I am holding some things back. I just figure he will

know all in due time. In the meantime I wonder if any of these

symptoms are common to people with PA.

Lee Ann

[Guest guest]

I'm confused--are panic attacks a symptom of pa?

[Guest guest]

I don't think it is but I know a few of us have said we have had

them. I am not sure if it is a PA thing though. Mine was in

association with " obsessive compulsive disorder " type symptoms.

My first pregnancy among other things at that time in my life set

these two things off for me. I am now doing much better. I

guess getting older has helped.

Lee Ann

-

>>>.I'm confused--are panic attacks a symptom of pa?<<<

[Guest guest]

Lee Ann,

I like your attitude. Don't ever give up fighting a stupid thing like PA.

I think it is ridiculous for some people to accept it as though PA has won.

There will be a cure some day but when that comes, who knows. Like you

said there are alot worse things even though at times that can be tough to

imagine. Life deals us many blows are character is determined by the way we

handle these blows.

God Bless!!

Have a nice Christmas. At 02:25 PM 11/30/99 -0500, you wrote:

>From: " Lee Ann Walter " <SAWalter@...>

>

>

>

>>>>>>> When people know say your too young for Arthritis I say

>well

>I look at it this way I saved one old person from getting it.

>Well feel better

> Gioia<<<<<<

>

>Hello,

>I would like to add to what has said by saying that many of

>us on this list had P and PA in our teens and twenties but did

>not get a proper diagnosis or treatment. I went to several

>different doctors trying to find out why I was having so many

>problems. I spent my early twenties looking for an answer and

>never got one. I had panic attacks so severe that I was taken to

>the hospital in an ambulance because I thought for sure I was

>dying. I am so grateful I do not have those panic attacks any

>more. They are disabling.

>

>I had the pain and swelling in my joints when I was young. The

>doctors never considered looking too far into my complaints even

>though I had psoriasis up and down my legs and they were

>infected. Not once did they try to find out what was going on.

>(It took my hair falling out like crazy to finally get some

>action!) They said it was all in my head. I was actually sent

>to a Psychologist! He did not help my symptoms at all of course!

>(But he did help me with a mother in law that is not so nice )

>When doctors can not find an obvious reason for a young woman's

>complaints they just assume there is a mental thing going on.

>They told me I was a nervous young mother. It really was

>insulting.

>

>Life can throw a curve ball at any time. I have two children who

>have Down syndrome. The struggles and challenges in life they

>will face will make P an PA look like easy. They are at risk for

>many different diseases and life threatening conditions including

>Alzheimer's at an early age. Some develop Alzheimer's in their

>early 20's.

>P and PA are certainly a serious disease but I try to look at the

>whole picture - It is rarely deadly, there are treatments that

>seem to be effective, by the time I am 56 (twenty years from now)

>there could be a cure. There will surely be more options as far

>as treatments and they will probably be safer than the ones we

>have now. Many people like my children do not have that to look

>forward too. I just keep reminding myself that things could be

>much worse! No matter what is going on in your life at any given

>time there is probably somebody else with something much worse!

>

>Lee Ann

>

>>Please visit our new web page at:

>http://www.wpunj.edu/icip/pa

>

>

[Guest guest]

>>>>>From: Coleen & Jim <jmoulton@...>

Lee Ann,

I like your attitude. Don't ever give up fighting a stupid thing

like PA.

I think it is ridiculous for some people to accept it as though

PA has won.

There will be a cure some day but when that comes, who knows.

Like you

said there are alot worse things even though at times that can be

tough to

imagine. Life deals us many blows are character is determined by

the way we

handle these blows.

God Bless!!

Have a nice Christmas. <<<<

Thank you Colleen or Jim?

Lee Ann

[Guest guest]

" Rodney R. Lilly " wrote:

> >

> > they give specific guidlines as to how to do this. Here's their website:

<A

> > HREF= " http://www.fda.gov/ " >FDA</A>

> >

[Guest guest]

That sometimes it's not what we give, but how we give it

That being different isn't just ok, it's perfectly acceptable

That I have just as much to teach as I have to learn

That I *can* do it, if I'm only given the chance

That a little extra effort can change the course of a life

That I'm *special* just because I'm me

The love that Ms. Kay has shown me will be imprinted on my heart

forever.

Love, Karrie

Sue (in a sobby(?) mood tonight) mom to Kate 10 and Karrie 4 w/ds

I love it! I think Ms Kay will too!

Gail

[Guest guest]

Ok, as long as you are still up...go to About.com and look for thyroid disease.

Lots of

good info there. Go through all the info pages...then there are two forums for

hyper.

-Pam-

[Guest guest]

Thanks Pam! I sure didn't get a lot of sleep last night! lol. I hope to

get busy doing more research soon. There is just so much to learn!

Jen

[Guest guest]

Remember you and your family will be continually in my prayers.

[ ] me again

> GOOD NEWS our daughter in law tested Negative ...

> and I am so happy about that. That will take alot

> off their minds I am sure. I may need you more

> than ever before now. I am praying that she does

> know and understand that the risks have to be so

> low but she just said I have to decide now what

> to do or how I would ever have a baby. It was

> not what she said it was the sound of her voice

> I pray that they can work through these things

> together in love. My heart sank...... but I

> think maybe that is because I am so jumping at

> every shadow this last week. Hugs

>

>

>

>

[Guest guest]

That's great! I can understand your daughter's

hesitation, this is certainly something you can't just

jump into. I am confident though, once they speak to a

specialist she will feel much better about it. After I

tested positive on the PCR test and had a biopsy, I

scheduled an appointment and my wife came with me and

we met with the doctor and his nurse and they helped

us understand much of what we were facing. -dz-

--- kbwaltke <kbwaltke@...> wrote:

> GOOD NEWS our daughter in law tested Negative ...

> and I am so happy about that. That will take alot

> off their minds I am sure. I may need you more

> than ever before now. I am praying that she does

> know and understand that the risks have to be so

> low but she just said I have to decide now what

> to do or how I would ever have a baby. It was

> not what she said it was the sound of her voice

> I pray that they can work through these things

> together in love. My heart sank...... but I

> think maybe that is because I am so jumping at

> every shadow this last week. Hugs

>

>

__________________________________________________

[Guest guest]

As you all are in mine. This is a two way street.

>

>

> Remember you and your family will be continually in my prayers.

>

>

> [ ] me again

>

>

> > GOOD NEWS our daughter in law tested Negative ...

> > and I am so happy about that. That will take alot

> > off their minds I am sure. I may need you more

> > than ever before now. I am praying that she does

> > know and understand that the risks have to be so

> > low but she just said I have to decide now what

> > to do or how I would ever have a baby. It was

> > not what she said it was the sound of her voice

> > I pray that they can work through these things

> > together in love. My heart sank...... but I

> > think maybe that is because I am so jumping at

> > every shadow this last week. Hugs

> >

> >

> >

> >

[Guest guest]

hi, i am new too. that is exactly what happens to me. and i too felt

crazy, now i feel sad and relief. i have hepatitis c , which allows

allot of immune defeciancy's to come into play. sometimes my finger

hurt, then feet, and ankles swell, and throb. then for 2 days i am

normal . my dr. told me that was one of the biggest signs of pa. i

hope i am not stepping boundaries since new..but now everything

makes sense.

[Guest guest]

Hi,

I have a very good RH doc in Wichita and one of the first things he told

me about PA was that it was the same as Rheumatoid Arthritis but that it

wasn¡Çt symmetrical. Meaning that PA does skip around while RA will be

the same on both sides of your body. I have joints that look terrible

on one hand (my left middle finger) but don¡Çt hurt, and joints that

don¡Çt look so bad but do hurt (fourth and fifth finger on right hand).

I think pain in my hands is the worst since it can limit me sooooo much.

Viooxx is more for Ostioarth. For PA the METHO and some of the RA drugs

work better. I¡Çm only 53 but am starting to take it easy. Quitting a

high paying high pressure job and taking a lesser substitute teaching

job to work around my flare days. Have you tried water exercise? I

swear by it, plus watching what you eat and reducing stress.

Meanemma

[ ] Me Again

Hi

I am still so confused about this PA. I am still awaiting confirmation

from

the rheumatologist on the 23rd. She said she had to rule out everything

else

that acts the same way before a definite diagnosis is established, since

there

is no test for the PA.

I feel like somedays this is in my " head " rather than my body. One day,

all

seems fine except some neck and low back achiness, the next day, my hand

hurts

so bad that I can't even pour milk, then it jumps somewhere else.

Sometimes

the pain is so bad it lasts for days and then I think it's gone because

I have

two good days in a row.

Is this normal of what happens?? I was temporarily put on Vioxx and had

to

stop it since it made me so nauseous. The doctor suggested I go back on

the

Bextra temporarily until all tests and x-rays are in.

Thanks so much for listening. I try to not let this get me down, but it

definitely keeps me from doing all the wonderful life things I waited

for in

retirement.

Definitely learning a lot from the reading on this message board.

Barb

[Guest guest]

At 03:17 PM 10/12/03, you wrote:

>I feel like somedays this is in my " head " rather than my body. One day, all

>seems fine except some neck and low back achiness, the next day, my hand

>hurts so bad that I can't even pour milk, then it jumps somewhere

>else. Sometimes the pain is so bad it lasts for days and then I think

>it's gone because I have two good days in a row.

>

>Is this normal of what happens??

When I first got PA, all of my days were bad days. But... now, I am just

like you. The disease can take different courses, at different times.

Sometimes it's constantly bad, sometimes it's constantly good, and

sometimes it's just a completely mixed bag. Last weekend my knees hurt so

much I could hardly sleep; most of this week I've been walking fine and

only having pain on stairs. Earlier this week, my hands were fine; this

weekend, I can completely relate to the thing about pouring milk. It is

*totally* unpredictable for me right now. So yeah, this can be normal, and

no, it is most assuredly NOT in your head.

[Guest guest]

At 06:17 PM 10/12/2003 -0400, you wrote:

>Hi

>

>I am still so confused about this PA. I am still awaiting confirmation from

>the rheumatologist on the 23rd. She said she had to rule out everything else

>that acts the same way before a definite diagnosis is established, since

>there

>is no test for the PA.

>

>this sounds like it could have been written by me. you describe exactly

>how i feel. my PA has progressed very slowly but i've been diagnosed since

>(i think) '97. mine migrates and at times i feel it's in my head but the

>ESR and my P and my ugly nails and stiffness etc etc say otherwise. hang

>in there, together we fight on!.....Mo

>

[Guest guest]

He said go home and learn more about DS. I think that is what is so

great about our Drs is that they think of us and don't get mad cause

we change our minds.

> Lillie

> DS 4/30/03 341

> 12/9/03 265

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

Lillie...For the life of me I can't remember your friends name...but

please give her a hug from us. She is not the first nor will she be

the last to dash at the last minute. Let her know that we don't

consider her a coward or weak or anything silly like that for not

going through with the surgery...for whatever reason, the time was

just not right for her, and that's ok.

Hugs

Jo