Introduction

[Guest guest]

Hello, Crystal. I'm so sorry to hear about your daughter. How bad is

her arthritis? Is there are obvious joint deformation? Or just

redness and swelling? Or just pain?

The supplements they have your daughter on are all really good.

Prednisone is a useful but troubling drug to use over the long-term.

If I were you, I would do a lot of Web research on the effects of

prednisone on children. Also I would add a calcium-magnesium-vitamin

D supplement to your daughter's diet, along with a general

multivitamin. Prednisone can leach calcium from the bones when used

for any length of time.

The treatments for JPsA are pretty much the same for JRA, so if you

find support groups for parents of children with the JRA you'll

probably also get support there. But I hope he used a support group

as well.

Here are a couple of links for you to check out to start with:

http://www.arthritis.co.za/psoriasis.html

http://38.144.5.234/conditions/DiseaseCenter/juvenilepsoriaticarthriti

s.asp

http://www.pediatriadifamiglia.net/airone/convegno/ansell.htm

> Hi, my name is Crystal and I am the mother of a beautiful ten year

> old little girl who was just diagnosed with JRA. The doctor

believes

> it to be the Psoriatic kind, because since the onset of the flare

up

> she has had psoriasis on her arms and head.

>...They have

> her on Predisone, Plaquenil, Vitamin E, Vitamin C, Fish Oil with

> Omega 3 fatty acids and aleve.

[Guest guest]

Ask your doc if a hot tub would help.

If anyone wants to purchase a hottub or spa ask for a prescription

from your doctor so you won't have to pay taxes.

PatB

[Guest guest]

Crystal --

I live in the eastern part of Washington state where the air is dry and we

have the four seasons. The Drs. here say this is the worst climate for P

and PA. I feel so much better when I go to places like Portland, Seattle,

or because there is more moisture and the water is softer, at least

that is my theory of why I feel better.

Good luck, Cheri

Re: [ ] Introduction

> Shirley, thank you so much for your kinds thoughts and words. Celeste

goes

> back to the rheumatologist on Tuesday and I will ask her then about the

hot

> tub, I will do anything I can to take away her pain. I was wondering about

> something I asked the nurse the other day and would love to get some

others

> input on this. We have only lived in Florida a little over a year and when

I

> asked the nurse if the dampness here could be making Celeste sick like

this,

> she said yes. That she has had it but it didn't come out until we moved

here.

> Any relate to this? I know my Mom who has RA, is miserable when she comes

> here. She gets the nodules and gets real sick and tired. I am willing to

pack

> up and move anywhere that she will be more comfortable if anyone knows

where

> that might be please let me know. Thanks again, Crystal

>

>

>

[Guest guest]

Hi Cheri,

I was surprised when I read your posting about where you live and

where you thought it would be better to live. I live in La Crosse,

WI--in a valley surrounded my bluffs on both sides and 3 rivers that run

through the city, now this is a bad place to live if you have PA or any

kind of arthur, because there is so much moisture and no where for it to

go because of the bluffs on both sides of the city. I was shocked when

you said that you feel better in a place like Seattle where they are

known for their life of rain. I would be bed ridden if I lived in

Seattle, because the humidity kills me with pain and stiffness. When we

go to Las Vegas for vacation, I can go out there full of pain medication

and still stiff and in a great deal of pain, and within one hour of

being there, I'm already feeling better from the dry climate. Maybe

everyone is different, but I know that the more humidity in the air, the

more I am stiff, swollen and in severe pain. My husband and I have

talked about moving to some place in the desert to help with my arthur,

but all of our family is here, and we can not go without coverage on

health insurance while he changes jobs, as the drug bill would kill us.

I don't know many people who can afford a chronic disease, especially

when drugs like Enbrel cost $1200/month. I was just surprised at your

body's response to humidity. When it comes to my body and humidity--the

less there is, the better I am. Isn't it interesting how each person is

affected differently by the same element. Take good care of yourself

Cheri--

cheri yost wrote:

> Crystal --

>

> I live in the eastern part of Washington state where the air is dry

> and we

> have the four seasons. The Drs. here say this is the worst climate

> for P

> and PA. I feel so much better when I go to places like Portland,

> Seattle,

> or because there is more moisture and the water is softer, at

> least

> that is my theory of why I feel better.

>

> Good luck, Cheri

> Re: [ ] Introduction

>

>

> > Shirley, thank you so much for your kinds thoughts and words.

> Celeste

> goes

> > back to the rheumatologist on Tuesday and I will ask her then about

> the

> hot

> > tub, I will do anything I can to take away her pain. I was wondering

> about

> > something I asked the nurse the other day and would love to get some

>

> others

> > input on this. We have only lived in Florida a little over a year

> and when

> I

> > asked the nurse if the dampness here could be making Celeste sick

> like

> this,

> > she said yes. That she has had it but it didn't come out until we

> moved

> here.

> > Any relate to this? I know my Mom who has RA, is miserable when she

> comes

> > here. She gets the nodules and gets real sick and tired. I am

> willing to

> pack

> > up and move anywhere that she will be more comfortable if anyone

> knows

> where

> > that might be please let me know. Thanks again, Crystal

> >

> >

> >

[Guest guest]

I live in Virginia (right out side of DC) with four seasons. I have been

thinking also of leaving to a different eliminate to see if the weather and

the surroundings effect my P and PA. Anyone with good suggestion let me know.

I want to do as many natural things as I can.I hate pills. But when your in

pain what choice do you have. Have a great day!

[Guest guest]

I just wanted to say thanks to everyone who answered my questions about the

climate. I am at a loss and don't know what to do. I live in Northeast

Florida and right now at 11 PM our humidity is 96%. It rained for two days

and my daughter has been in horrible pain. She goes back to her doctor

tomorrow and IM hoping to get some answers to some of my questions. I dread

watching the weather channel because I can already tell by that what kind of

day Celeste is going to have. I have another question. Her doctor's nurse

told me that her doctor believes it is the Psoriatic kind but has to list it

as JRA because it is rare for children to get this type. I have read all I

can find and everything tells me that 80% of people with psoriatic arthritis

have nail pitting. Celeste's nails look fine, could this maybe be something

yet to come or could her doctor be wrong? Thanks again. Crystal

[Guest guest]

Celeste, my heart really goes out to your daughter and to you. I was

diagnosed with PA when I was 10 or 11 years old myself, but I really don’t

remember it affecting my life until high school. Some of the drugs I tried

back then were feldene and azulsufidine. I tried plenty of NSAIDs back then

but feldene stands out in my memory. I also took carafate to protect my

stomach. My pediatric rheumy wanted to treat my PA aggressively. I don’t

remember being in any pain at 10 and I can honestly say I really didn’t

understand what was going on or happening to me.

I don’t personally know your daughter and I don’t have any children, but 1

piece of parenting advice I have is don’t let your daughter see you worry

too much. I’ve had a couple very rough years with PA and a few other

autoimmune problems and its pained me a very great deal to see how much it

has made my mother worry. Its even been a source of guilt for me.

As far as the weather down there, I live in NYC and hot humid summer days

are very tough on me. Cold winter days make me stiff, hot and humid days

make me hurt.

Personally, I don’t mean to interfere, but I’d try to find an alternative to

the prednisone. As a steroid it does very strange things to your hormones.

I’m sorry to not delve deeper but its way past my bedtime and I’ve been sick

lately, so…

My best wishes go out to you and your daughter (as well as your whole

family).

I wish your daughter a pain free day.

Ari

Re: [ ] Introduction

Hi Cheri,

I was surprised when I read your posting about where you live and

where you thought it would be better to live. I live in La Crosse,

WI--in a valley surrounded my bluffs on both sides and 3 rivers that run

through the city, now this is a bad place to live if you have PA or any

kind of arthur, because there is so much moisture and no where for it to

go because of the bluffs on both sides of the city. I was shocked when

you said that you feel better in a place like Seattle where they are

known for their life of rain. I would be bed ridden if I lived in

Seattle, because the humidity kills me with pain and stiffness. When we

go to Las Vegas for vacation, I can go out there full of pain medication

and still stiff and in a great deal of pain, and within one hour of

being there, I'm already feeling better from the dry climate. Maybe

everyone is different, but I know that the more humidity in the air, the

more I am stiff, swollen and in severe pain. My husband and I have

talked about moving to some place in the desert to help with my arthur,

but all of our family is here, and we can not go without coverage on

health insurance while he changes jobs, as the drug bill would kill us.

I don't know many people who can afford a chronic disease, especially

when drugs like Enbrel cost $1200/month. I was just surprised at your

body's response to humidity. When it comes to my body and humidity--the

less there is, the better I am. Isn't it interesting how each person is

affected differently by the same element. Take good care of yourself

Cheri--

cheri yost wrote:

> Crystal --

>

> I live in the eastern part of Washington state where the air is dry

> and we

> have the four seasons. The Drs. here say this is the worst climate

> for P

> and PA. I feel so much better when I go to places like Portland,

> Seattle,

> or because there is more moisture and the water is softer, at

> least

> that is my theory of why I feel better.

>

> Good luck, Cheri

> Re: [ ] Introduction

>

>

> > Shirley, thank you so much for your kinds thoughts and words.

> Celeste

> goes

> > back to the rheumatologist on Tuesday and I will ask her then about

> the

> hot

> > tub, I will do anything I can to take away her pain. I was wondering

> about

> > something I asked the nurse the other day and would love to get some

>

> others

> > input on this. We have only lived in Florida a little over a year

> and when

> I

> > asked the nurse if the dampness here could be making Celeste sick

> like

> this,

> > she said yes. That she has had it but it didn't come out until we

> moved

> here.

> > Any relate to this? I know my Mom who has RA, is miserable when she

> comes

> > here. She gets the nodules and gets real sick and tired. I am

> willing to

> pack

> > up and move anywhere that she will be more comfortable if anyone

> knows

> where

> > that might be please let me know. Thanks again, Crystal

> >

> >

> >

[Guest guest]

Crystal, sorry I confused your names in my previous message, it was late and

I had just read 4 days of postings and I should have been sleeping. As far

as the rain is concerned, my back and knees and shoulders are just as

accurate of a barometer as any used by any weatherman (or woman). I can

always tell when it’s going to rain. It even causes my moods to shift, but

then again so does the moon so you can’t go by moods. I don’t know for a

fact that if you have psoriasis and arthritis that its PA, and I know that

many people have PA and RA, but I was a child with PA and I’ve never tested

positive for RA. I also don’t have pitting nails either, my cuticles don’t

look good but my psoriasis is on my ankles & feet and the palms of my hands.

As a child I had it the worst on my knees but over the years its “moved”.

Good luck with the rheumy, but just remember that he/she is only human and

that doctors can be and sometimes are wrong. Ask any of the people on this

site who have been misdiagnosed for years.

Good luck, Ari

[Guest guest]

Hey Crystal,

I live in Northeast Florida as well and the humidity throws me for a loop,

too. I used to live in Gainesville. They don't call it the Swamp for nothing

....I was miserable for seven long years. Suggest that she try swimming on

these days it really helps me.

I had my first PA flare when I was 14 but I had no nail pitting until college

and even then it was mild. The less time I spend in the ocean the worse my

nails get.

I am sorry Celeste has to deal with this disease. Later Debbie

[Guest guest]

Hi ,

High humidity, and even worse is when the humidity is rising! It makes me

stiffen up and hurt

worse than anything! FYI- I am a fellow cheesehead --- theres only a few of

us on the list.Feel free to email me if you like.

> Hi Cheri,

> I was surprised when I read your posting about where you live and

> where you thought it would be better to live. I live in La Crosse,

>

[Guest guest]

Hi Debbie, thanks for your letter. I live in ville, swamp here too

lol. I just don`t know what to do about the weather here. I am willing to

pack up and move but I just wish I knew that it would help. Her doctor says

she will have arthritis no matter where we live, which I know is true, but I

want to be where it bothers her the least. She had another nodule pop up on

her hand today, I didn't let her see me cry though, IM trying not to make her

worry. It is so hard some days though. Thanks to you all for your help, it

means a lot to a stressed out Mom like me. Crystal

[Guest guest]

Hi Crystal -- I have not found any particular place or type of climate that

helps me feel better when I'm having a flare. I live in Alaska (the banana belt,

along the coast) and I can definitely say I hurt worse when the weather is

changing, i.e., a storm is coming in. And if I get cold, I hurt more. But when I

have been in L.A., Calif. or northern California, even when the weather is warm

and dry, I don't notice a whole lot of difference. I still wake up hurting and

stiff and have to walk it out. It seems from reading

these posts, that not everyone reacts the same to the same climate. You might

have to take " vacations " to various places to let your daughter experience the

climate before you can be sure any kind of move would help. -- Jan O'

freakych@... wrote:

> Hi Debbie, thanks for your letter. I live in ville, swamp here too

> lol. I just don`t know what to do about the weather here. I am willing to

> pack up and move but I just wish I knew that it would help. Her doctor says

> she will have arthritis no matter where we live, which I know is true, but I

> want to be where it bothers her the least. She had another nodule pop up on

> her hand today, I didn't let her see me cry though, IM trying not to make her

> worry. It is so hard some days though. Thanks to you all for your help, it

> means a lot to a stressed out Mom like me. Crystal

>

>

[Guest guest]

I purchased a paraffin bath from Walgreens.60.00..they sell cheaper other

places. I really enjoy mine. Later Debbie

[Guest guest]

Do you feel the parffin works well with your P ? I have P on my poor little

toes.I would do anything to help change the feel and look of my tooties.Any

andvise let me know.Has anyone lost weight nd saw a change in both P and PA.I

am over weight and my doctors never say anything about it. wondering if lost

of weight would hep.?? take care Jen

[Guest guest]

In a message dated 03/07/2002 1:06:58 AM Eastern Standard Time,

Sleepless096@... writes:

> I have P on my poor little

> toes.I would do anything to help change the feel and look of my tooties

Jen - I don't really have P, just really dry thick skin. It helps

tremendously to put lotion on your feet a couple of times a day and then put

cotton socks on after they are all lubed up.

[Guest guest]

I haven't really thought about it. Probably it does...has mineral oil in wax

mix. Some say diet makes a big difference. Others disagree. Excess weight

puts a lot of extra work on all your joints...so losing weight should help.

But it is hard to keep off. I am a wonderful stress eater. Later Debbie

[Guest guest]

Gill - You will find lots and lots of information in the archives. What you

described sounds like about what almost all of us have felt, both physically

and emotionally. I think it's ironic that about 99% have thought we must be

crazy or hypocondriacs in describing our symptoms until we were properly

diagnosed.

My number one piece of advice is always the same - you need a rheumatologist

(one who you can relate to well) to treat this - not a primary or general

doctor. It's is much too specialized of a disease not to let a specialist

handle it.

You've found a good place here for information and support. Welcome

[

[Guest guest]

Hi,

Sent Gil some links. Here was one more I like:

http://www.arthritis.ca/types%20of%20arthritis/psoriatic%

20arthritis/default.asp?s=1

[

[Guest guest]

Gill,

There are almost one-thousand of us on this list who all have the

same condition you have (Psoriatic Arthritis), so you should by no

means feel alone even if you're geographically isolated. I live in

Southern California about 15 miles north of Los Angeles in a very

populated area, and yet I have never personally met any others with

this disease, except for twice when my rheumatologist got four of us

together in a local hospital's radiology lab for an injection of

radioactive phosphorous into our knees to destroy the inflamed

synovial tissue (it was either that or a surgical synovectomy). If I

recall correctly, it was called a " P2 " injection. The radioactive

isotope of phosphorous that is used has a very short half life of

only two weeks, so that in a couple of months or so it has decayed

away so that it's no longer a danger and gradually stops destroying

tissue. The synovial cavity confines the radioactive liquid and

prevents it from spreading throughout the body. It took two shots to

do the trick in my case, but that was still much preferable to

surgery.

By the way, I wonder how you and others found this forum? I'd like to

pose the same question to everyone else as well, just out of

curiosity. I assume it was probably via a web search engine, which is

how I found this forum. I searched the (and the internet

in general) looking for Psoriasis and Psoriatic Arthritis, but I

wonder if anyone was referred to it, or found it through some other

means (by accident, etc).

-- Ron

> Hi,

>

> My name is Gill and I have just signed up to the list.

> ... I feel very alone and isolated. My family are very supportive

> but they have never heard of this condition. ...

> Gill

[Guest guest]

Hi Ron -- I found it the same way you did, through a web search. -- Jan

O', Alaska

[ ] Re: Introduction

> Gill,

>

> There are almost one-thousand of us on this list who all have the

> same condition you have (Psoriatic Arthritis), so you should by no

> means feel alone even if you're geographically isolated. I live in

> Southern California about 15 miles north of Los Angeles in a very

> populated area, and yet I have never personally met any others

> with

> this disease, except for twice when my rheumatologist got four of

> us

> together in a local hospital's radiology lab for an injection of

> radioactive phosphorous into our knees to destroy the inflamed

> synovial tissue (it was either that or a surgical synovectomy). If

> I

> recall correctly, it was called a " P2 " injection. The radioactive

> isotope of phosphorous that is used has a very short half life of

> only two weeks, so that in a couple of months or so it has decayed

> away so that it's no longer a danger and gradually stops

> destroying

> tissue. The synovial cavity confines the radioactive liquid and

> prevents it from spreading throughout the body. It took two shots

> to

> do the trick in my case, but that was still much preferable to

> surgery.

>

> By the way, I wonder how you and others found this forum? I'd like

> to

> pose the same question to everyone else as well, just out of

> curiosity. I assume it was probably via a web search engine, which

> is

> how I found this forum. I searched the (and the

> internet

> in general) looking for Psoriasis and Psoriatic Arthritis, but I

> wonder if anyone was referred to it, or found it through some

> other

> means (by accident, etc).

>

> -- Ron

>

>

>

> > Hi,

> >

> > My name is Gill and I have just signed up to the list.

> > ... I feel very alone and isolated. My family are very supportive

> > but they have never heard of this condition. ...

> > Gill

>

>

>

>

>

[Guest guest]

Hi Jeanie,

my name is Wilma, I live in Scotland. I am new to this board as I

don't know anyone who has PA who lives near me. Reading everything

that everyone has written and yourself I find that it was me you were

writing about. All symptoms are the same and like you I have

developed seizures and was told it was only a small degree of

epilepsy that I had. I am 35 years old and have had psoriasis all my

life and developed PA 3 years ago. Everything comes with it, the

depression not sleeping,the pain. I have been on many medications and

most recently was put on methotrexate but it did not agree with me.

My fits started again after only 2 tablets so currently awaiting

appointment for new medication. Fed up with it now as I'm a single

mother and my son does a lot of work for me.I'm lucky that I have

him. You don't look forward to new days as you think well, I'll only

be the same as the day before. Tired and sore. Looking forward to

hearing from everyone and yourself. Wilma!

> Hi everybody.

>

>

> My name is Jeani, I live in California. I am 57 years

> old. I just recently developed P and PA. First leasons

> showed up about three years ago. I guessed what they

> were and self medicated. My oldest brother has had P

> since the age of 10.

> Two years ago my wrist became painful (My mouse hand)

> and last year it spread to the rest of my hands. I

> lost a Toenail, but there was no joint involvement. I

> started to loose fingernails. Last August I got a red

> bump on my pinky joint and saw a rumy for the first

> time. He shot it with cortisone, but a couple of

> months later all the joints on my right hand were

> inflamed and he put me on MTX.

> I felt better in a week, but had to go off twice due

> to viral infections, one being on my thumb from P.

>

> Looking over posts for a couple of months I see some

> things that I can definatly relate to that my rumy

> didnt inform me of.

> 1. I have always had a low body temp 96

> 2. I had many " growing pains " as did my mother.

> 3. I had verious exzemias throughought my childhood,

> especially the cracking behind the ears and around my

> nose.

> 4. Fatigue has been my enemy all my life.

> 5. over the last 5 years or so I have developed sever

> sleep problems.

> 6. I have reactive hypoglycemia

> No doctor has ever been able to tell me why I had

> these problems, You know, female hysteria!

> 25 years ago I woke up with sausage fingers and acute

> pain in many joints. It came each spring and would

> subsiquently fade in the fall and winter. The rumy

> told me I needed a psychiatrist since all tests were

> negative. He was very unpleasent.

> 15 years ago I suffered from major depression which

> took a long time, medication and a divorce to get

> over. (25 year marriage-mostly he didn't like the fact

> that I couldn't do as much house work as before, etc)

> I started to have seizures, which don't show on

> EEG's, I was told they were psychogenic. (after 15

> years of psychotherapy, I think not)

> in 1994 I had another breakdown with depression and

> fatigue. I was told I was bipolar.

> I was in school and as I finished my credential, found

> I didn't have the energy to teach, went back and

> learned computer graphics then found I was even

> weaker. I keep pushing myself until I lost my home and

> everything I had built after the divorce where I had

> already lost everything once. My Psyc told me to go on

> SSI. I now live in a senior home as disabled. I can

> not even drive.

> My oldest brother was the only family member we

> thought had P. Now my little sister has P and PA and

> recently had surgery on her foot. My other older

> brother has both P and PA and has had surgery on his

> hands and hips. My younger brother has P. Only one

> brother is free. I am finding that I have many cousins

> on my mother's side with all our PA symptoms without

> leasons. Looking back on my mother's life, she

> obviously had both P and PA,undiagnosed.

> I also have a lot of MS symptoms which come and go. I

> have what appears to be sleep apnea. I understand that

> narcolepsy is a part of PA, my sister has it.

>

> I have a few questions.

> Many people on this board say they also have

> fibromyalgia, fatigue syndrome, MS, Lupus, and other

> autoimune disorders.

> I am wondering if it is all realy the PA and these are

> misdiagnoses made before the PA diagnosis.

> These disorders, including PA do not have difinitive

> tests and are arrived at by observing symptoms.

>

> I am working with Dr. Pagano's diet, seeing a

> chiropractor regularly, been doing range of motion

> exercizes, heavy on a spiritual path, still go to

> psycho therapy and get lots of sleep when I am not

> awaken by the apnea. Last week I went to a local

> picnic with a mental health group. This is the first

> social event I've had in 2 years. It felt good to feel

> good enough to get out. They were playing some Beach

> Boys music and I got up and danced. To me, music takes

> all the pain away and I was realy enjoying the twist

> and the swim. I had been told by many that exercize is

> not olny good, but necessary for Arthritis. I then

> walked 1/4 mile to the bus stop.

> I felt great, until the next nite!

> As I was going to sleep, I had the usual awakening of

> gasping for air (apnea), but both my spine and my

> sternum were inflamed and the pain was too great to

> breath. I subsiquently had an asthma attack and

> started coughing. This was much more painful than

> broken ribs!!!! I didn't know that exercizing a joint

> would cause the PA to attack it. I still have a limp

> from the inflamed joint in my right foot from walking.

> I see my rumy tomorow. I have a lot f questions for

> him. Will let you know what he says.

>

> Looking for some input from members,

> Thanks,

> Jeani

>

> __________________________________________________

>

[Guest guest]

Hi Wilma,

Sorry to hear the methotrexate didn't work for you. I give myself

shots, maybe that would work better for you. My doctor says that it

is better tolerated by the liver. I take other medicines that effect

the liver and have to be very careful and watch my liver closely.

I am just taking tylenol for the pain, so the mtx helps some, but

when I feel better, I do more, then I swell in response and hurt

more. It's a vicious cycle.

It must be hard being a single mom with this disease and all the

pain. I am lucky that I already raised my family and only have my

cat to take care of now. She has been such a blessing. When I

have seizures she lays real close to me to protect me. She really

knows when I'm not OK.

I am working a lot with diet to flush toxins from my body. It is

helping for the seizures and the MS symptoms, but if I overdue,

they still pop up.

On the fourth of June I am going to have a sleep study. I suspect

I have apnea. If so, it can be treated and it will allow me more

restful sleep which will help all the disorders and diseases.

Sometimes I wonder how and why one body was given so many

obsticles to deal with and at other times I think it is all one and

the same, especially when reading this board.

Take care and I am looking forward to hearing from you,

Jeani Mills

> > Hi everybody.

> >

> >

> > My name is Jeani, I live in California. I am 57 years

> > old. I just recently developed P and PA. First leasons

> > showed up about three years ago. I guessed what they

> > were and self medicated. My oldest brother has had P

> > since the age of 10.

> > Two years ago my wrist became painful (My mouse hand)

> > and last year it spread to the rest of my hands. I

> > lost a Toenail, but there was no joint involvement. I

> > started to loose fingernails. Last August I got a red

> > bump on my pinky joint and saw a rumy for the first

> > time. He shot it with cortisone, but a couple of

> > months later all the joints on my right hand were

> > inflamed and he put me on MTX.

> > I felt better in a week, but had to go off twice due

> > to viral infections, one being on my thumb from P.

> >

> > Looking over posts for a couple of months I see some

> > things that I can definatly relate to that my rumy

> > didnt inform me of.

> > 1. I have always had a low body temp 96

> > 2. I had many " growing pains " as did my mother.

> > 3. I had verious exzemias throughought my childhood,

> > especially the cracking behind the ears and around my

> > nose.

> > 4. Fatigue has been my enemy all my life.

> > 5. over the last 5 years or so I have developed sever

> > sleep problems.

> > 6. I have reactive hypoglycemia

> > No doctor has ever been able to tell me why I had

> > these problems, You know, female hysteria!

> > 25 years ago I woke up with sausage fingers and acute

> > pain in many joints. It came each spring and would

> > subsiquently fade in the fall and winter. The rumy

> > told me I needed a psychiatrist since all tests were

> > negative. He was very unpleasent.

> > 15 years ago I suffered from major depression which

> > took a long time, medication and a divorce to get

> > over. (25 year marriage-mostly he didn't like the fact

> > that I couldn't do as much house work as before, etc)

> > I started to have seizures, which don't show on

> > EEG's, I was told they were psychogenic. (after 15

> > years of psychotherapy, I think not)

> > in 1994 I had another breakdown with depression and

> > fatigue. I was told I was bipolar.

> > I was in school and as I finished my credential, found

> > I didn't have the energy to teach, went back and

> > learned computer graphics then found I was even

> > weaker. I keep pushing myself until I lost my home and

> > everything I had built after the divorce where I had

> > already lost everything once. My Psyc told me to go on

> > SSI. I now live in a senior home as disabled. I can

> > not even drive.

> > My oldest brother was the only family member we

> > thought had P. Now my little sister has P and PA and

> > recently had surgery on her foot. My other older

> > brother has both P and PA and has had surgery on his

> > hands and hips. My younger brother has P. Only one

> > brother is free. I am finding that I have many cousins

> > on my mother's side with all our PA symptoms without

> > leasons. Looking back on my mother's life, she

> > obviously had both P and PA,undiagnosed.

> > I also have a lot of MS symptoms which come and go. I

> > have what appears to be sleep apnea. I understand that

> > narcolepsy is a part of PA, my sister has it.

> >

> > I have a few questions.

> > Many people on this board say they also have

> > fibromyalgia, fatigue syndrome, MS, Lupus, and other

> > autoimune disorders.

> > I am wondering if it is all realy the PA and these are

> > misdiagnoses made before the PA diagnosis.

> > These disorders, including PA do not have difinitive

> > tests and are arrived at by observing symptoms.

> >

> > I am working with Dr. Pagano's diet, seeing a

> > chiropractor regularly, been doing range of motion

> > exercizes, heavy on a spiritual path, still go to

> > psycho therapy and get lots of sleep when I am not

> > awaken by the apnea. Last week I went to a local

> > picnic with a mental health group. This is the first

> > social event I've had in 2 years. It felt good to feel

> > good enough to get out. They were playing some Beach

> > Boys music and I got up and danced. To me, music takes

> > all the pain away and I was realy enjoying the twist

> > and the swim. I had been told by many that exercize is

> > not olny good, but necessary for Arthritis. I then

> > walked 1/4 mile to the bus stop.

> > I felt great, until the next nite!

> > As I was going to sleep, I had the usual awakening of

> > gasping for air (apnea), but both my spine and my

> > sternum were inflamed and the pain was too great to

> > breath. I subsiquently had an asthma attack and

> > started coughing. This was much more painful than

> > broken ribs!!!! I didn't know that exercizing a joint

> > would cause the PA to attack it. I still have a limp

> > from the inflamed joint in my right foot from walking.

> > I see my rumy tomorow. I have a lot f questions for

> > him. Will let you know what he says.

> >

> > Looking for some input from members,

> > Thanks,

> > Jeani

> >

> >

__________________________________________________

> >

[Guest guest]

Dean,

I hypothesize that you are correct. The body has in its genetic code the

knowledge to know what is correct.

I am angry also at doctors who saw me as a " late bloomer " as well. I had to

also deal with a rural southern community who didn't understand things

either.

I will offer a suggestion though. Have you had your Growth Hormone checked.

If you have hypogonadism you might also have low growth hormone as well.

Get this checked especially if you say you are beginning to feel your

age....

Digest Number 81

>

>

>

[Guest guest]

Ardi,

Welcome. I'm sure many of us cannot relate to everything you've been

through, but we have each lived through part of it (the hormonal

part). One thing you may want to consider are the consequences of not

using T. These include diminished mental powers, depression,

osteoporsis, diabetes, weak muscles, fatigue, etc. So there may be

some good reasons to take it aside from anything relating to

secondary sexual characteristics or libido. Androgens (like T) are

necessary for the health of all cells in the body. You may want to

look up some of the links in our " bookmarks " section for further

medical implications of testosterone deficiency. You could always try

it for a while. If you don't like it, the effects it has on your body

reverse themselves when it is discontinued.

Regards,

K4

> Hi! I'm Ardi... I live in Florida.

>

> I'm a 27 year old intersexed person who's been raised (and

currently living)

> as male.

>

> In my research to get a diagnosis for my condition (most likely

PAIS), I've

> been diagnosed with hypogonadism.

>

> The doctor prescribed T for me, which I've refused. I'm not ready

to put my

> body through any significant changes at this point in my life. I

don't feel

> the need for testosterone and live fine without it (despite having

high

> estrogen levels).

>

> I know that probably seems funny to many of you. But I've had lots

of

> surgeries in my life due to my intersexuality..on my

genitals..double

> mastectomy..etc.

>

> I really don't want to have anything changed significantly on my

body anymore

> unless it's medically necessary.. and I don't see T as being

medically

> necessary for me.

>

> I hope the posts will help me understand more about this condition.

>

> Sincerely,

> Ardi

>

>

>

[Guest guest]

Thanks Terry,

I have the ever-present bottle of water beside me. I learned that one real fast. I live in Mandeville Louisiana. I just got remarried on April Fool's day of this year and am fortunate to have a very patient spouse. I used to live in Mesa back in the early 80's.

Thanks for the welcome,

Andi

-----Original Message-----From: Terry Long [mailto:pawpawto3@...]Sent: Tuesday, November 19, 2002 12:42 AM Subject: Re: [ ] Introduction

Hi Andi My name is Terry, I started my peg-combo in January & will be done 12/20/02. You will disscover if you drink all of the water they tell you to "a gollon a day" you deal with the sides a lot better. I am in souther AZ jusy out side of Phoenix where are you feom. Welcome to the group.