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Oh Arron C. (the C. is because there is another Arron in our group)

I am so sorry to read your e-mail. Please trust me..things will get

better. It may take awhile to find the correct " med. cocktail "

for you, but if your docs are on the ball, and by already giving

you a diagnosis, I think they probably are. I started out being

on only the Medrol. That's a long story from many years ago, but

I'm still here. I was freaked out too! My temps were 106+ with

my second bout with the " dragon " as we sometimes call this disease.

I was not diagnosed until about 16 years later. Knowledge of this

disease has come a long way....still we expect and hope for that

knowledge to increase even more in the near future. I too was put

on antibiotics at first. Many different ones. None of which helped.

Welcome to " The Stillgan's Island " support group. There are many

very wonderful people that will be welcoming you. You will find many

answers to your questions here, and if you feel stressed, or depressed,

please feel free to talk about it. If you feel happy or silly please feel

free to share.

Just wanted to also let you know that *most* folks who are diagnosed

with AOSD go into a full non med remission within two years. Many go into

a medical remission. So don't give up hope Arron.

From Wisconsin,

tricia

& & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & &

-- Freaking Out

I was just diagnosed with AOSD after a month of 104.9 fevers every night in

the ICU of my local hospital. Lost 50 lbs in that month. Unreal night sweats

etc... I was finally taken by Ambulance 100 miles to Nashville, St.

Hospital where I was finally taken off all of the Antibiotics and placed on

Medrol and showed immediate results. I am now home, but freaking out about

my (our) prognosis.

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Welcome . I've had this disease just over 25 years and have been very

lucky to have medication induced remission for many of those years. My name

is Patty and all call me Melt. My onset was that severe too and it took the

first couple to 3 years for it to finally calm down but it can happen and we

shall wish the same for you. I look forward to knowing you and we do have

chat times several times a week so watch for those postings. Hope you day

is well, Melt in So. Calif.

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

From: " Cunningham " <aaronsnewmailaccount@...>

> I was just diagnosed with AOSD after a month of 104.9 fevers every night

in the ICU of my local hospital. Lost 50 lbs in that month. Unreal night

sweats, etc...

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Thanks!

And you...Did yours go into remission?

C.

> Oh Arron C. (the C. is because there is another Arron in our group)

>

> I am so sorry to read your e-mail. Please trust me..things will get

> better. It may take awhile to find the correct " med. cocktail "

> for you, but if your docs are on the ball, and by already giving

> you a diagnosis, I think they probably are. I started out being

> on only the Medrol. That's a long story from many years ago, but

> I'm still here. I was freaked out too! My temps were 106+ with

> my second bout with the " dragon " as we sometimes call this disease.

> I was not diagnosed until about 16 years later. Knowledge of this

> disease has come a long way....still we expect and hope for that

> knowledge to increase even more in the near future. I too was put

> on antibiotics at first. Many different ones. None of which helped.

>

> Welcome to " The Stillgan's Island " support group. There are many

> very wonderful people that will be welcoming you. You will find

many

> answers to your questions here, and if you feel stressed, or

depressed,

> please feel free to talk about it. If you feel happy or silly

please feel

> free to share.

>

> Just wanted to also let you know that *most* folks who are

diagnosed

> with AOSD go into a full non med remission within two years. Many

go into

> a medical remission. So don't give up hope Arron.

>

> From Wisconsin,

> tricia

> & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & &

>

>

>

>

> -- Freaking Out

>

> I was just diagnosed with AOSD after a month of 104.9 fevers every

night in

> the ICU of my local hospital. Lost 50 lbs in that month. Unreal

night sweats

> etc... I was finally taken by Ambulance 100 miles to Nashville,

St.

> Hospital where I was finally taken off all of the Antibiotics and

placed on

> Medrol and showed immediate results. I am now home, but freaking

out about

> my (our) prognosis.

>

>

>

>

>

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Boy do I have the chills and the sweats - My dear husband put and air

conditioner in our bedroom window, a big fan, and an electric blanket. I am hot

one

minute and freezing the next. I'm driving my family crazy with my hot/cold.

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Hi Arron,

Yes & no & yes & no.....started in 1971, (no diagnosis) sick for

about 3 months. Complete remission..no meds. In 1973..Wham!

106+ tmeps. 3 different hospitals..over 3 months. sick a few more

months. Complete remission..no meds. 1979..Wham! Wham!

Finally diagnosed in 1987.

Still taking 8 mgs. Medrol, & Celebrex...plus a few other meds for

nerve damage, and anxiety.

Have had both shoulders replaced and one knee.

Many of my problems are due to the fact that my body is a rebel.

Most meds have not agreed with me over the years...so it has

been many years of trial and error and frustration.

From Wisconsin,

~~tricia~~

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

-- Freaking Out

>

> I was just diagnosed with AOSD after a month of 104.9 fevers every

night in

> the ICU of my local hospital. Lost 50 lbs in that month. Unreal

night sweats

> etc... I was finally taken by Ambulance 100 miles to Nashville,

St.

> Hospital where I was finally taken off all of the Antibiotics and

placed on

> Medrol and showed immediate results. I am now home, but freaking

out about

> my (our) prognosis.

>

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  • 1 year later...
Guest guest

Sorry you aren't getting a lot of support. Try not to get discouraged.

You know how you are feeling, so don't let others cause you to doubt

yourself.

It's common for people with rheumatic diseases to go for long periods of

time with the wrong diagnosis or no consensus on the diagnosis.

I would suggest keeping a diary and make note of health changes when they

occur. It may help you and your physicians figure things out.

Venting is good. Come here any time to do that.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Freaking Out

>

>

>

> I have been really ill for a couple of years now. I have +ra factor.

> I can't seem to get any answers from the doctors. After all this

> time, I have at least come to some minor terms with the fact that I

> am ill. My family thinks that I'm " hysterical " and is constantly mad

> at me because of episodes where I am ill again and am unable to be at

> important events that I would go through any lengths to be at. My

> boyfriend doesn't get it. I am disabled for other reasons and am on

> medicaid. Just a little tidbit! I got to where it was so bad that I

> prepared myself that I was most likely dying. I did notice that

> while

> on birth control injections that I had a pattern of episodes that

> were

> more severe and realized that I do have something that features

> relapse and remission. The frequency seemed to taper down a bit since

> stopping injections and I decided to try to have some sort of life

> and

> am trying to change my attitude or outlook. I have no positive

> support

> and just wanted to vent, I guess. Have really been searching for

> information and wondered if any of you had to wait years before

> finding out anything? I left out specifics because I cant't type

> that

> long. It is an ordeal.

>

>

>

>

>

>

>

>

>

>

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  • 10 months later...

i didnt even see it happen-he was so quick....he landed on his

stomach on the floor. i gave him a bottle, he fell asleep and he

seemed to be ok-but im worried about his neck!

In Plagiocephaly , " Mullin " <mullin987@...>

wrote:

>

> Did he hit his head? Land on his head or where?

>

>

>

> Come Join us:

> Babies2005/

> Group Owner/Moderator

> first_time_preg_to_parent/?

yguid=234404

> 398

> Group Owner/Moderator

>

>

>

>

> FREAKING OUT

>

>

> my son just fell off our bed!!! he had his helmet on thank

god...but

> still, should i be worried??? im absolutey frantic!

>

>

>

>

>

> For more plagio info

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i didnt even see it happen-he was so quick....he landed on his

stomach on the floor. i gave him a bottle, he fell asleep and he

seemed to be ok-but im worried about his neck!

In Plagiocephaly , " Mullin " <mullin987@...>

wrote:

>

> Did he hit his head? Land on his head or where?

>

>

>

> Come Join us:

> Babies2005/

> Group Owner/Moderator

> first_time_preg_to_parent/?

yguid=234404

> 398

> Group Owner/Moderator

>

>

>

>

> FREAKING OUT

>

>

> my son just fell off our bed!!! he had his helmet on thank

god...but

> still, should i be worried??? im absolutey frantic!

>

>

>

>

>

> For more plagio info

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Hey , My daughter fell out of her bouncy seat last week and I was worried that she hit her head. The Pediatrician said to examine her head for any bruise or red mark or other sign of injury and to worry if a place caved in, instead of knotting up. She also said to make sure that she was coherent, i.e. would respond to your voice and her name. Be sure to watch him closely and be concerned if he starts vomitting. I believe this is a sign of a concussion. They also told me not to let her fall asleep right away, which was problematic, as it was her naptime and I'm sure a problem for you, as it's likely his bedtime. I would probably just call your Ped for peace of mind. If you are really concerned, you could always take him to the Emergency Room. The Ped will best be able to direct you. I'm sorry for little Sammy and hope you all have a better night and that he is

okay. I know things like this are so scary. Best, Mullin <mullin987@...> wrote: Did he hit his head? Land on his head or where? Come Join us: Babies2005/ Group Owner/Moderator first_time_preg_to_parent/?yguid=234404398 Group Owner/Moderator -----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of starrspangledgirlSent: Monday, February 27, 2006 8:31 PMPlagiocephaly Subject:

FREAKING OUTmy son just fell off our bed!!! he had his helmet on thank god...but still, should i be worried??? im absolutey frantic!

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Hey , My daughter fell out of her bouncy seat last week and I was worried that she hit her head. The Pediatrician said to examine her head for any bruise or red mark or other sign of injury and to worry if a place caved in, instead of knotting up. She also said to make sure that she was coherent, i.e. would respond to your voice and her name. Be sure to watch him closely and be concerned if he starts vomitting. I believe this is a sign of a concussion. They also told me not to let her fall asleep right away, which was problematic, as it was her naptime and I'm sure a problem for you, as it's likely his bedtime. I would probably just call your Ped for peace of mind. If you are really concerned, you could always take him to the Emergency Room. The Ped will best be able to direct you. I'm sorry for little Sammy and hope you all have a better night and that he is

okay. I know things like this are so scary. Best, Mullin <mullin987@...> wrote: Did he hit his head? Land on his head or where? Come Join us: Babies2005/ Group Owner/Moderator first_time_preg_to_parent/?yguid=234404398 Group Owner/Moderator -----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of starrspangledgirlSent: Monday, February 27, 2006 8:31 PMPlagiocephaly Subject:

FREAKING OUTmy son just fell off our bed!!! he had his helmet on thank god...but still, should i be worried??? im absolutey frantic!

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Just make sure he isn't dizzy, confused, lathargic or vomiting-signs

of concussion. My son fell off the be a few weeks ago(with helmet on).

I felt so aweful...and I was freaked out! But just a small bruise on

his forehead. If you're worried, you can call the PED, but I have come

to find that kids are surprisingly resiliant. Hope everything is okay!

Bye, (Max DOCbanded 2/7)

>

> my son just fell off our bed!!! he had his helmet on thank god...but

> still, should i be worried??? im absolutey frantic!

>

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Just make sure he isn't dizzy, confused, lathargic or vomiting-signs

of concussion. My son fell off the be a few weeks ago(with helmet on).

I felt so aweful...and I was freaked out! But just a small bruise on

his forehead. If you're worried, you can call the PED, but I have come

to find that kids are surprisingly resiliant. Hope everything is okay!

Bye, (Max DOCbanded 2/7)

>

> my son just fell off our bed!!! he had his helmet on thank god...but

> still, should i be worried??? im absolutey frantic!

>

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thanks all....hes fine and smiling like normal. of course i woke him

up to make sure hes OK.....and now he wants to play! guess its gonna

be an all nighter for me! thats ok, its worth it.... :)

> >

> > my son just fell off our bed!!! he had his helmet on thank

god...but

> > still, should i be worried??? im absolutey frantic!

> >

>

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Hi there , Sorry about that. I'm tired and saw the cute pic of Sammy and thought he had fallen. Glad your guy is okay and hope her's is too :). Best, rah Mullin <mullin987@...> wrote: It wasnt Sammy it was starredspangledgirls baby. Thanks for the advice though. I am sure it helps her feel better.

Come Join us: Babies2005/ Group Owner/Moderator first_time_preg_to_parent/?yguid=234404398 Group Owner/Moderator -----Original

Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of BlandSent: Monday, February 27, 2006 8:47 PMPlagiocephaly Subject: RE: FREAKING OUT Hey , My daughter fell out of her bouncy seat last week and I was worried that she hit her head. The Pediatrician said to examine her head for any bruise or red mark or other sign of injury and to worry if a place caved in, instead of knotting up. She also said to make sure that she was coherent, i.e. would respond to your voice and her name. Be sure to watch him closely and be concerned if he starts vomitting. I believe this is a sign of a concussion. They also told me not to let her fall asleep right away, which was problematic, as it was her naptime and I'm sure a problem for you, as it's likely his bedtime. I would

probably just call your Ped for peace of mind. If you are really concerned, you could always take him to the Emergency Room. The Ped will best be able to direct you. I'm sorry for little Sammy and hope you all have a better night and that he is okay. I know things like this are so scary. Best, Mullin <mullin987@...> wrote: Did he hit his head? Land on his head or where? Come Join us: Babies2005/ Group Owner/Moderator first_time_preg_to_parent/?yguid=234404398 Group Owner/Moderator -----Original

Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of starrspangledgirlSent: Monday, February 27, 2006 8:31 PMPlagiocephaly Subject: FREAKING OUTmy son just fell off our bed!!! he had his helmet on thank god...but still, should i be worried??? im absolutey frantic! Brings words and photos together (easily) withPhotoMail - it's free and works with .

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thanks all....hes fine and smiling like normal. of course i woke him

up to make sure hes OK.....and now he wants to play! guess its gonna

be an all nighter for me! thats ok, its worth it.... :)

> >

> > my son just fell off our bed!!! he had his helmet on thank

god...but

> > still, should i be worried??? im absolutey frantic!

> >

>

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Hi there , Sorry about that. I'm tired and saw the cute pic of Sammy and thought he had fallen. Glad your guy is okay and hope her's is too :). Best, rah Mullin <mullin987@...> wrote: It wasnt Sammy it was starredspangledgirls baby. Thanks for the advice though. I am sure it helps her feel better.

Come Join us: Babies2005/ Group Owner/Moderator first_time_preg_to_parent/?yguid=234404398 Group Owner/Moderator -----Original

Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of BlandSent: Monday, February 27, 2006 8:47 PMPlagiocephaly Subject: RE: FREAKING OUT Hey , My daughter fell out of her bouncy seat last week and I was worried that she hit her head. The Pediatrician said to examine her head for any bruise or red mark or other sign of injury and to worry if a place caved in, instead of knotting up. She also said to make sure that she was coherent, i.e. would respond to your voice and her name. Be sure to watch him closely and be concerned if he starts vomitting. I believe this is a sign of a concussion. They also told me not to let her fall asleep right away, which was problematic, as it was her naptime and I'm sure a problem for you, as it's likely his bedtime. I would

probably just call your Ped for peace of mind. If you are really concerned, you could always take him to the Emergency Room. The Ped will best be able to direct you. I'm sorry for little Sammy and hope you all have a better night and that he is okay. I know things like this are so scary. Best, Mullin <mullin987@...> wrote: Did he hit his head? Land on his head or where? Come Join us: Babies2005/ Group Owner/Moderator first_time_preg_to_parent/?yguid=234404398 Group Owner/Moderator -----Original

Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of starrspangledgirlSent: Monday, February 27, 2006 8:31 PMPlagiocephaly Subject: FREAKING OUTmy son just fell off our bed!!! he had his helmet on thank god...but still, should i be worried??? im absolutey frantic! Brings words and photos together (easily) withPhotoMail - it's free and works with .

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Did he hit his head? Land on his head or where?

Come Join us:

Babies2005/

Group Owner/Moderator

first_time_preg_to_parent/?yguid=234404398

Group Owner/Moderator

-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of starrspangledgirlSent: Monday, February 27, 2006 8:31 PMPlagiocephaly Subject: FREAKING OUTmy son just fell off our bed!!! he had his helmet on thank god...but still, should i be worried??? im absolutey frantic!

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Did he hit his head? Land on his head or where?

Come Join us:

Babies2005/

Group Owner/Moderator

first_time_preg_to_parent/?yguid=234404398

Group Owner/Moderator

-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of starrspangledgirlSent: Monday, February 27, 2006 8:31 PMPlagiocephaly Subject: FREAKING OUTmy son just fell off our bed!!! he had his helmet on thank god...but still, should i be worried??? im absolutey frantic!

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It wasnt Sammy it was starredspangledgirls baby. Thanks for the advice though. I am sure it helps her feel better.

Come Join us:

Babies2005/

Group Owner/Moderator

first_time_preg_to_parent/?yguid=234404398

Group Owner/Moderator

-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of BlandSent: Monday, February 27, 2006 8:47 PMPlagiocephaly Subject: RE: FREAKING OUT

Hey ,

My daughter fell out of her bouncy seat last week and I was worried that she hit her head. The Pediatrician said to examine her head for any bruise or red mark or other sign of injury and to worry if a place caved in, instead of knotting up. She also said to make sure that she was coherent, i.e. would respond to your voice and her name. Be sure to watch him closely and be concerned if he starts vomitting. I believe this is a sign of a concussion. They also told me not to let her fall asleep right away, which was problematic, as it was her naptime and I'm sure a problem for you, as it's likely his bedtime. I would probably just call your Ped for peace of mind. If you are really concerned, you could always take him to the Emergency Room. The Ped will best be able to direct you.

I'm sorry for little Sammy and hope you all have a better night and that he is okay. I know things like this are so scary.

Best,

Mullin <mullin987@...> wrote:

Did he hit his head? Land on his head or where?

Come Join us:

Babies2005/

Group Owner/Moderator

first_time_preg_to_parent/?yguid=234404398

Group Owner/Moderator

-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of starrspangledgirlSent: Monday, February 27, 2006 8:31 PMPlagiocephaly Subject: FREAKING OUTmy son just fell off our bed!!! he had his helmet on thank god...but still, should i be worried??? im absolutey frantic!

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It wasnt Sammy it was starredspangledgirls baby. Thanks for the advice though. I am sure it helps her feel better.

Come Join us:

Babies2005/

Group Owner/Moderator

first_time_preg_to_parent/?yguid=234404398

Group Owner/Moderator

-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of BlandSent: Monday, February 27, 2006 8:47 PMPlagiocephaly Subject: RE: FREAKING OUT

Hey ,

My daughter fell out of her bouncy seat last week and I was worried that she hit her head. The Pediatrician said to examine her head for any bruise or red mark or other sign of injury and to worry if a place caved in, instead of knotting up. She also said to make sure that she was coherent, i.e. would respond to your voice and her name. Be sure to watch him closely and be concerned if he starts vomitting. I believe this is a sign of a concussion. They also told me not to let her fall asleep right away, which was problematic, as it was her naptime and I'm sure a problem for you, as it's likely his bedtime. I would probably just call your Ped for peace of mind. If you are really concerned, you could always take him to the Emergency Room. The Ped will best be able to direct you.

I'm sorry for little Sammy and hope you all have a better night and that he is okay. I know things like this are so scary.

Best,

Mullin <mullin987@...> wrote:

Did he hit his head? Land on his head or where?

Come Join us:

Babies2005/

Group Owner/Moderator

first_time_preg_to_parent/?yguid=234404398

Group Owner/Moderator

-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of starrspangledgirlSent: Monday, February 27, 2006 8:31 PMPlagiocephaly Subject: FREAKING OUTmy son just fell off our bed!!! he had his helmet on thank god...but still, should i be worried??? im absolutey frantic!

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GOTTA LOVE THOSE BANDS,LOL. We had the same thing happen and the band

saved us too.

CAROLG

>

> my son just fell off our bed!!! he had his helmet on thank god...but

> still, should i be worried??? im absolutey frantic!

>

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GOTTA LOVE THOSE BANDS,LOL. We had the same thing happen and the band

saved us too.

CAROLG

>

> my son just fell off our bed!!! he had his helmet on thank god...but

> still, should i be worried??? im absolutey frantic!

>

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  • 3 months later...
Guest guest

Sherrie,

I feel your pain. I am feeling the same way.....I am so worried that the pain medicine will not work. All the decisions what if I make the wrong dicision Pain pump or epidurial...etc.

Luckly I am working Mon-Thurs it will help keep my mine off all the what if's.

Sherrie I am right there with you. me and we can chat since I can't sleep either.

Kim

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