hello

[Guest guest]

Dear ,

I found that at first it took quite a bit of

time to adjust psychologically to the constraints that the PA can put on my

capabilities and mobility. When I am lucky

enough to get a good remission going-

about two months long - three times a year at most-- I make the most of it,

believe you me. I drive hours to visit friends and relatives. If the weather

is warm, I try to go away on another weeks

vacation {somewhere in driving distance}

Most of all I live life to the fullest.

I do need to use wrist splints and a cane

when things are painful -- it would not be so annoying if other people would

mind their own business and not ask 30 questions, I should think of some

queer

answers and have them at the ready next time!

You didn't say what dose of which medication you are on. Do you feel

confident that this dose is sufficient? If not you and your doc should

consider going with the injection once a week, in combo with something like

Kytril or Zofran

for the resultant nausea, Oh, by the way,

manym myself included have tried the Metho shot after supper with good

results. That way you sleep off much of the exhaustion that hits after the

shot starts working.

Good Luck

[Guest guest]

sorry to hear you are developing PA. as far as getting official with the PA

see a rhuematologist. If you would like to meet with other young adults with

similar ailments, the Chatanooga chapter of the Arthritis Foundation is

hosting the south east regional AJAO(American Juvenile Arthritis

Organization) conference this August 6-8. This conference will also have a

section just for young adults, i am also planning on attending.

mark

markusmgru@...

[Guest guest]

I live in East TN and was luckey to find a derm. who was well qualified to

treat my PA. Over my 30 years of fighting this problem, this was the first

time that I found that blend of talents. Most doctors have not been very

aware of the others. Good luck in finding someone worthwhile. When you do

find a competent doctor -- things get a lot better.

[ ] Hello

>From: NicNash@...

>

>My name is (I am 28) and I am new to this group. I joined to

>hopefully learn more about PA and have support. I have had severe

Psoriasis

>for more than 15 years and feel certain that I have recently developed PA.

>I am one that has lost faith in the medical community and have been

reluctant

>to go to the doctor regarding my increased fatigue,swelling and joint pain.

>I have turned instead to the net to educate myself and believe it or not

>discovered PA for the first time. None of my derms ever mentioned the

>possiblity. So thus far I have only made a self diagmosis and I realize

that

>it is necessary to go to the Doc for the " official " diagnosis. I am coming

to

>terms with the fact that I need to make an appointment. Can my derm

diagnose

>this or is there a specialist I should see?

>

>I am anxioous to learn more about what has helped others in this group and

>more about the varying symptoms.

>

>I live in Nashville Tn and if anyone happens to live in Mid Tn and can

refer

>a doctor Iwould be grateful.

>

>Thanks for listening. I look forward to getting to know everyone.

>

>

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

>Attention small business owners:

>

>Did you know that ONElist is a great way for small business owners

>to stay in touch with their customers?

>

[Guest guest]

Hi Lee Ann --

I'm in my late thirties and was diagnosed a year and a

half ago. I imagine I had it some five or six years

before diagnosis, and saw lots of doctors who could

not get a grip on the problem -- so you are not alone

in this late diagnosis bit! My hands and feet hurt

quite a bit, and I have ankylosing spondylitis in my

SI joints.

You don't say what meds your RD (Rheumatoid Doctor)

had you on, but if you are on folic acid I'd imagine

s/he has you on methotrexate. I find MTX works better

than just about anything I have tried. I used to take

it orally @ 25 mg/week, but my doctor recently

switched me to the injectible form. You might find

the MTX upsets your stomach, and injections help to

minimize the upset. Indocin, a drug which is good for

pain, can also upset your stomach, and the way out of

that trouble is to switch to Celebrex.

There are lots of resources you should consider

consulting. One is the web page that accompanies this

list, at http://www.wpunj.edu/pa/ . While you are

there you can visit the " web resources " page. Among

the many good webpages is the one for the Arhtitis

Foundation of America, at http://www.arthritis.org .

At that site you can become a member, which entitles

you to their magazine, " Arthritis Today. " The July/

August issue, on stands now, has a VERY good guide to

arthritis drugs.

And there are chats in where you can meet arthritis

people from all over the world and talk about doctors,

drugs, families, experiences, etc. You can try the

one at Dr. Koop, http://www.drkoop.com which is open

24x7 but does not have a specific arthritis room.

They do feature a Psoriatic Arhritis chat on Wednesday

nights at 8-9p EDT. About.com, http://www.about.com ,

has a room open specifically for arthritis 24x7. All

sorts of arthritis people come to that room, often

starting around 8p EDT just about every night. They

host a PA chat on Thursday at 8p, but is only loosely

tied to PA. I was not a " chat " person before I found

these rooms, and they are still the only places I

" chat. " I have always thought chat a waste of time,

and think it largely is, but directed, mature chats

like the ones on About.com and Drkoop.com are very

useful, especially is you are new to arthritis.

So, Lee Ann, if you have waded all the way through

this, welcome to the PA list! There are lots of good

people here, and with it and some of the other

resources I mentioned here I hope your detour to

arthritis-land will be that much more comfortable.

===

, NJ Highlands

raharris@...

_____________________________________________________________

[Guest guest]

In a message dated 4/2/2003 11:40:26 AM Pacific Standard Time,

janlindner@... writes:

> Hi,

> I'm new to the group and wanted to introduce myself. My name is Jan

> and I'm a 40 year old stay at home mom. I have 1 son he is 8

> years old and he has AS. I haven't had a lot of experience with AS

> and I'm glad to find a support group for parents.

Hi Jan,

I have a 4 yr old son dx with AS and other diagnosis possibilities....his so

young jury is still out unofficially....This is the BEST group!!! (if I do

say so myself)

I'm a stay at home mom too and yes, 40! Please ask any questions you have

regarding ....there is a lot of experience here and its been very

helpful.

Johanna, mom of 3, sometimes 4

[Guest guest]

Jan...

Welcome to the group. I am also a SAHM to three sons... the youngest, ,

has AS and is a freshman in high school... He was not dx until age 11. This

is a wonderful place for information, encouragement and support. Jump in to

the conversation anytime...I look forward to getting to know you and your

family better.

Blessings,

Gail

[Guest guest]

I also have an 8 year old son with Asperger's. We live in Texas. Where are

you located? Has your son been officially dx'd. I am still trying to get

my son in to be evaluated and diagnosed. Until he gets his " label " , we are

more limited on the help we can get for him.

Blessings!

Diane

( ) Hello

Hi,

I'm new to the group and wanted to introduce myself. My name is Jan

and I'm a 40 year old stay at home mom. I have 1 son he is 8

years old and he has AS. I haven't had a lot of experience with AS

and I'm glad to find a support group for parents.

[Guest guest]

We live in Las Vegas, NV. He has been dx'd. It took all of his

kindergarten year and a couple of weeks of 1st grade before they

finally got him evaluated. And I had to keep pushing them. Keep after

the school you have to force them to give help. I'm very active in

the classrooms with him and talk to his teachers and couselors about

his progress and problems every week. Share all your concerns and

tell them about things that help him. It will make things better.

Best Wishes,

Jan

> I also have an 8 year old son with Asperger's. We live in Texas.

Where are

> you located? Has your son been officially dx'd. I am still trying

to get

> my son in to be evaluated and diagnosed. Until he gets

his " label " , we are

> more limited on the help we can get for him.

>

> Blessings!

> Diane

>

> ( ) Hello

>

>

> Hi,

> I'm new to the group and wanted to introduce myself. My name is Jan

> and I'm a 40 year old stay at home mom. I have 1 son he is

8

> years old and he has AS. I haven't had a lot of experience with AS

> and I'm glad to find a support group for parents.

>

>

>

>

[Guest guest]

In a message dated 6/12/03 11:34:04 AM Eastern Daylight Time,

faeriehouse@... writes:

> I though it would be a good idea to at least introduce myself to everyone.

>

>

>

,

Hi! Welcome to our loopy group!

Roxanna ôô

What doesn't kill us

Makes us really mean.

[Guest guest]

In a message dated 6/12/2003 8:34:08 AM Pacific Daylight Time,

faeriehouse@... writes:

> I was also told that, although he appeared to be gifted, to lower my sights

> as my son wouldn't amount to much. He is now 19. He's even brighter than

> they though he was.

Hi and welcome. This is so crummy that they would say that!!! Ugh!

Glad to hear that they were SO wrong. I have a 4 yr old who has had 3

differing diagnoses in the last 6 months! AS, Expressive-Receptive LD,

PDD-NOS......We have him in a special ed preschool for another year and I just

made it

through my first official IEP.....

Johanna

[Guest guest]

Hi,

My name is . My oldest son was recently 'officially' diagnosed AS. When

he was originally diagnosed at age 4, AS wasn't on the list of choices and I

was told he had a VERY severe case of ADHD. I was also told that, although he

appeared to be gifted, to lower my sights as my son wouldn't amount to much. He

is now 19. He's even brighter than they though he was. He has never scored below

a 95%ile on any standardized test (99 is his norm) and thought the SAT's were

too easy. I have been through more IEP meetings and 504 conferences than most

'professionals' at this point. I also have 2 other children both of whom are ADD

(one with an LD tag and one with an ODD tag as well-- we live in the land of

alphabet soup!).

I though it would be a good idea to at least introduce myself to everyone.

[Guest guest]

Hi ,

Welcome! I'm Liz, and I've got a 15 year old son with AS, and a 20 year old NT

daughter who is in college. My son wasn't diagnosed until he was 10 or 11 --

the school system always told me he was " too functional " or " not in the bottom 5

% so we don't have to test him " and like an idiot I believed them. Rather than

fight, we put him in a private school for kids with learning disabilities.

*Major* mistake! The school was mostly for kids with ADHD, not for kids with AS.

They all ganged up on him. Had to take him out and put him in a special ed

public school, where he remains to this day. We're very happy with it.

Liz

faeriehouse@... wrote:

> Hi,

>

> My name is . My oldest son was recently 'officially' diagnosed AS. When

he was originally diagnosed at age 4, AS wasn't on the list of choices and I

was told he had a VERY severe case of ADHD. I was also told that, although he

appeared to be gifted, to lower my sights as my son wouldn't amount to much. He

is now 19. He's even brighter than they though he was. He has never scored below

a 95%ile on any standardized test (99 is his norm) and thought the SAT's were

too easy. I have been through more IEP meetings and 504 conferences than most

'professionals' at this point. I also have 2 other children both of whom are ADD

(one with an LD tag and one with an ODD tag as well-- we live in the land of

alphabet soup!).

>

> I though it would be a good idea to at least introduce myself to everyone.

>

>

>

[Guest guest]

Hi, !!!!!!

I am glad you joined in. One of the things that help me along the way is hearing

other parents who are " ahead of me " in this journey tell about their

experiences and overall hearing how eventually these kids of ours do find their

niche in life and can be productive happy individuals!

Fania

mom to M 10.5yo boy- AS

S 8.5yo girl - ADHD

N 2yo boy - plain mischievous :-)

wife to Alan - don't start me on that one ! lol

Re: ( ) Hello

Hi,

My name is . My oldest son was recently 'officially' diagnosed AS. When

he was originally diagnosed at age 4, AS wasn't on the list of choices and I

was told he had a VERY severe case of ADHD. I was also told that, although he

appeared to be gifted, to lower my sights as my son wouldn't amount to much. He

is now 19. He's even brighter than they though he was. He has never scored below

a 95%ile on any standardized test (99 is his norm) and thought the SAT's were

too easy. I have been through more IEP meetings and 504 conferences than most

'professionals' at this point. I also have 2 other children both of whom are ADD

(one with an LD tag and one with an ODD tag as well-- we live in the land of

alphabet soup!).

I though it would be a good idea to at least introduce myself to everyone.

[Guest guest]

Dear Liz,

In some ways I think I 'lucked out' with my son. I had some experience with

special education prior to my son's birth (mostly volunteering at my church as a

teenager and then working in a voc rehab agency for a few years). I also knew a

few people personally who worked professionally with special needs children.

When my son was 2 I took him to a friend who worked as a Speech Pathologist. My

son did not speak at the time (which was my reason for questioning things). He

managed a few words (ma-ma) and several sounds that weren't really words (ah ju

for apple juice). The strange thing was I knew he understood me and that he was

quite bright even though he wasn't talking. She confirmed that it wasn't just

mom worrying and gave me some sound advice as to who and what to see when I got

home to get him services. He started school at a private special ed. preschool

for children with speech and hearing disabilites. He went from non-verbal to

reading in under 2 years. He continued to recieve speech therapy even after

our move to a different state (that offered nothing but therapy 2 x 30 for kids

like my son). At 4, he was tested again and they labeled him with severe ADHD.

ALthough it seemed like an answer at the time, eventualy I realized that wasn't

'all' of what was going on with my son. The schools eventually just listed him

as OHI (other health Impaired)more to shut me up than anything else but it got

him services- they could have called him a duck and I'd have gone along with it

as long as it got him help!

By middle school he was the only student in both the Gifted and LD class- he

also was recieving physicaly and occupational therapy outside of school for

dexterity delays (fine and gross motor) and major balance issues (to this day he

literaly bounces off the walls walking down the hallway at home).

The flip side--

I have the only 19 year old who actually says- and means it too!- thank you for

everything I do for him.

He's a giant teddy bear of a kid/man- sweet and loving.

He's a true genius - and an absent minded professor.

He forgets alot but he always does what you ask him to if you remind him- with

no complaints.

Heck he tutored me in Chemistry when I went back to school last year.

He is totally devoted to his younger sister and brother and myself.

He graduated from High School last year as a state scholar, scored 1350 on the

SAT's and is attending college on full scholarships and the help of voc rehab.

He managed to Ace 4 years of Latin, and every advanced math and science course

they could throw at him.

My son isn't quiet sure what God has in mind for him but we both know its

something special. At the rate we are going he's either going to make a fortune

inventing a new video game that makes a mint (and donating a fortune to cure

something) or he'll come up with a computer system that makes a major difference

in peoples lives.

They told me not to aim high.. So we aimed for the stars.

[Guest guest]

What a great story! He has really done well for himself. That reflects well on

him as well as on you! (You really advocated for him) Tell me, what role does

voc rehab have for him in college?

Liz

faeriehouse@... wrote:

> Dear Liz,

>

> In some ways I think I 'lucked out' with my son. <snip>

> My son isn't quiet sure what God has in mind for him but we both know its

something special. At the rate we are going he's either going to make a fortune

inventing a new video game that makes a mint (and donating a fortune to cure

something) or he'll come up with a computer system that makes a major difference

in peoples lives.

> They told me not to aim high.. So we aimed for the stars.

[Guest guest]

we live in the land of alphabet soup!).

>

> I though it would be a good idea to at least introduce myself to

everyone.

>

>

Hi! I loved that. The speech teacher asked me again today if I had my

son's dx on paper. I told her I had several for each child...tell me

what you need...we have it. lol.

[Guest guest]

Dear Liz,

Voc Rehab is willing to pay for 4 full years at a state college or university

less an grants th\or scholarships that he may be elligable for.. not jsut

tution either but books and expenses and any thing else he may need helps with.

He is currently attending the local community college and will be transfering

to a larger state college in another year.

God never gives you more than you can handle; he just has more confidence in

me then I have in myself.********* " Do Little Things With Great Love "

Mother

[Guest guest]

Fania,

When you can catch N, please give him big hugs and kisses from me! I am glad

it wasn't meningitis<whew>.

I remember running away too, and Nick never went farther than around the

block. Last night he refused to leave the room when I TOLD him to. I almost

prefer the running. I was so angry with him. He promised me he would do his

homework(already modified) and fought me tooth and nail the whole way... you

know the drill. Anyway, it's done, and he even got to bed on time. Argh.

I hope it gets better. I'll keep you in my prayers for when he goes back to

school.

Love

Tammy

[Guest guest]

I'm glad the baby is alright. That is a scary thing to go thru.

MISSY

SAHM to some special kids!!!

Excuse Me While I Go

Raise Tomorrow's Future.

( ) hello

> HI everyone,

> still rarely getting to the computer. at least not as much as I am used

to..

> .

> spent this week three sleepless nights (and days) , two of which in the ER

> with baby - he is FINE now, but we had a scare with meningitis.

> now we just have to keep an eye on his BP.

> He is already running around at a pace I cannot catch......

>

> M is having a really hard time. very nervous. has run away twice when

angry,

> but did not go to far and came back adn told us where he was. (I see these

> things come in sync in our list, I noticed another post about running

out...

> .)

> Monday is back to school, and I dread it.

> F

>

>

>

[Guest guest]

> HI everyone,

> still rarely getting to the computer. at least not as much as I am

used to..

> .

> spent this week three sleepless nights (and days) , two of which in

the ER

> with baby - he is FINE now, but we had a scare with meningitis.

> now we just have to keep an eye on his BP.

> He is already running around at a pace I cannot catch......

>

> M is having a really hard time. very nervous. has run away twice

when angry,

> but did not go to far and came back adn told us where he was. (I

see these

> things come in sync in our list, I noticed another post about

running out...

> .)

> Monday is back to school, and I dread it.

> F

[Guest guest]

is playing me again!! I have about had it!! Ive tried to send

this now 4 times!! I replyed.... Sorry to hear about the baby!!

Glad he is doing better! Will keep him in my prayers!

Steph

> > HI everyone,

> > still rarely getting to the computer. at least not as much as I

am

> used to..

> > .

> > spent this week three sleepless nights (and days) , two of which

in

> the ER

> > with baby - he is FINE now, but we had a scare with meningitis.

> > now we just have to keep an eye on his BP.

> > He is already running around at a pace I cannot catch......

> >

> > M is having a really hard time. very nervous. has run away twice

> when angry,

> > but did not go to far and came back adn told us where he was. (I

> see these

> > things come in sync in our list, I noticed another post about

> running out...

> > .)

> > Monday is back to school, and I dread it.

> > F

[Guest guest]

Oh Fania! I hope the baby is better by now!

Roxanna

> .

> spent this week three sleepless nights (and days) , two of which in

the ER

> with baby - he is FINE now, but we had a scare with meningitis.

> now we just have to keep an eye on his BP.

> He is already running around at a pace I cannot catch......

[Guest guest]

<<<<<<<<! I hope the baby is better by now! Roxanna>>

yes, thank you !

F

[Guest guest]

Please confirm!

+++ Attachment: No Virus found

+++ MessageLabs AntiVirus - www.messagelabs.com

[Guest guest]

/message/61132

just follow through the replys.

i would get a hair test.

> Hi, all I am new here. My son was diagnosed with PDD:NOS last april

> 2003. I would appreciate all emails or posts considering eyes all

of

> a sudden crossing a few times a day. Hubby says he is just tired.

Is

> this possible? My birth to three class teacher suggested lazy eye

> pops up around this age (3)? Any suggestions? Anyone can check out

my

> profile if they wish I would love to hear some support as I am a

busy

> mom of three with a hombased business to run so I don't really have

> time to go to a support group 30 minutes away. Thanks in advance )