Re: 's Rhuemy Appt

[Guest guest]

Big Hugs. Sounds like alot. I hope you get some answers.

naturesnotionsnj@... wrote: Well, today had waaaay too many highs

and lows

The highs were: the pain that is feeling in her knees, ankles, lower

back and one hand are NOT from her JRA.

The lows: we now are scheduled to have a bone scan done this coming Tuesday

to rule out something called Osteoid Osteoma, which are a form of benign bone

tumors.

Ok, that scared the * & %# out of me( sorry there are no other words ( )The

rhuemy said the reason that he is suggesting this test is because the pain

that she is experiencing isn't consistent with JRA or AnkSpn.

Plus there is no swelling, no heat from the pained area, nothing! He's also

upset over the fact that the pain in her knees is waking her from a sound

sleep. He said 99% of the time, JRA will not do that.

And to make things more hectic, but to cover his butt on all bases, he wants

her to see a hematologist and have a full blood workup done to rule out

childhood leukemia. If it weren't for the fact that this dr has been voted best

in America 3 yrs in a row and just voted one of Philly's top dr's in his

field, I would of called him nuts!

Because some of her symptoms are falling into that category too. (, so he

wants to rule out EVERYTHING he can.

So..in a nutshell, we still have no answers and another 6 mt script for

Motrin, but in a little higher dose.

Soooo... as soon as I find out more I will fill ya's in.

( , 5 ,JRA, AkSp)

[Guest guest]

Sorry that is looking at more tests. If its any

comfort to you, my daughter complains of knee, ankle, wrist and low

back pain. She doesn't have much swelling or warmth...(well

apparently she has swelling in her fingers but I can't see it)

Then again I guess we have been in the same boat as you as far as

doing more testing...currently finding out about lupus tomorow.

Hope that you get the tests and results soon. I know the waiting is

hard and with the things he is looking for it makes it all the

harder.

(Aundrea 10 systemic)--

- In , naturesnotionsnj@... wrote:

>

> Well, today had waaaay too many highs and lows

> The highs were: the pain that is feeling in her knees,

ankles, lower

> back and one hand are NOT from her JRA.

> The lows: we now are scheduled to have a bone scan done this

coming Tuesday

> to rule out something called Osteoid Osteoma, which are a form of

benign bone

> tumors.

> Ok, that scared the * & %# out of me( sorry there are no other

words ( )The

> rhuemy said the reason that he is suggesting this test is because

the pain

> that she is experiencing isn't consistent with JRA or AnkSpn.

> Plus there is no swelling, no heat from the pained area, nothing!

He's also

> upset over the fact that the pain in her knees is waking her from

a sound

> sleep. He said 99% of the time, JRA will not do that.

>

> And to make things more hectic, but to cover his butt on all

bases, he wants

> her to see a hematologist and have a full blood workup done to

rule out

> childhood leukemia. If it weren't for the fact that this dr has

been voted best

> in America 3 yrs in a row and just voted one of Philly's top dr's

in his

> field, I would of called him nuts!

> Because some of her symptoms are falling into that category too.

(, so he

> wants to rule out EVERYTHING he can.

>

> So..in a nutshell, we still have no answers and another 6 mt

script for

> Motrin, but in a little higher dose.

> Soooo... as soon as I find out more I will fill ya's in.

>

> ( , 5 ,JRA, AkSp)

>

>

>

[Guest guest]

- keep the faith. Our Hunter too fell into that category - we had

the bone scan and an MRI. The MRI and bone scan showed two unspecified

masses in her shoulder and ankle. We feared the worst and was referred to a

surgeon who specializes in pediatric oncology. We had to have two biopsy done

at

the same time. Our Rheumy stated that some of Hunter symptoms were not

" normal symptoms of JRA " so he wanted to rule out some really scarier things.

When the surgeon came into our room after the surgery he had a smile on his

face as big as the Mississippi River - I think he too was worried what he

would find. But guess what it was not cancer it was JRA and the masses were

snynovial fluid that was becoming cyst like. It is a good thing that your

doctor is being so cautious - I will be praying for your little . Sandi

Ken Hunter (7 Systemic)

[Guest guest]

Thank you everyone for you prayers and well wishes.

I made the mistake of posting an update on to one of my other groups

and just got yelled at!( and I sent them the SAME EXACT post that I sent to

this group)

Because I said that I was having a bad day. I didn't mean that I personally

was having a rotten day because of having to take her to the dr's, I meant

that I was having a bad day because one of my babies was hurting and NOTHING

that I did was able to help her.

I was having a bad day because my daughter, who was up and running around 24

hrs previously was now in such pain that she wasn't even able to stand up,

and that was breaking my heart.

I was told that I was being selfish and maybe I should try putting myself in

her shoes for a day. Believe me, if there were a way to, I would! I would

take 's place for any length of time that we needed. whether it was just

for a few hours, or months.

Sorry to vent, but at least I know you guys understand!

(

( , 5 ,JRA, AkSp)

[Guest guest]

In a message dated 6/23/2006 8:50:42 A.M. Eastern Daylight Time,

deerhuntert6@... writes:

But guess what it was not cancer it was JRA and the masses were

snynovial fluid that was becoming cyst like

Thank you Sandy!

That actually made me feel a bit better.

I did look online last night for some info on this Osteiod osenoma(sp?) and

what I read actually wasn't scary and laid a lot of my worries to rest.

The article said that they were benign bone tumors and actually if the

person could handle to pain, they would actually go away on their own within 33

months. So, at least knowing that made me feel better. Here I was thinking bone

cancer and amputations, etc, and was pretty besides myself. Guess I should of

listened better to the rhuemy when he said IF did have it, it wasn't

anything to get too upset over, because it was treatable.

( , 5 ,JRA, AkSp)

[Guest guest]

I am so sorry for you- those sound like some scary possibilities,

we'll be praying for some reather positive answers.

Tanis

Kylie 3-pauci

22 months- unspecific mono arthritis

>

> Well, today had waaaay too many highs and lows

> The highs were: the pain that is feeling in her knees,

ankles, lower

> back and one hand are NOT from her JRA.

> The lows: we now are scheduled to have a bone scan done this

coming Tuesday

> to rule out something called Osteoid Osteoma, which are a form of

benign bone

> tumors.

> Ok, that scared the * & %# out of me( sorry there are no other

words ( )The

> rhuemy said the reason that he is suggesting this test is because

the pain

> that she is experiencing isn't consistent with JRA or AnkSpn.

> Plus there is no swelling, no heat from the pained area, nothing!

He's also

> upset over the fact that the pain in her knees is waking her from

a sound

> sleep. He said 99% of the time, JRA will not do that.

>

> And to make things more hectic, but to cover his butt on all

bases, he wants

> her to see a hematologist and have a full blood workup done to

rule out

> childhood leukemia. If it weren't for the fact that this dr has

been voted best

> in America 3 yrs in a row and just voted one of Philly's top dr's

in his

> field, I would of called him nuts!

> Because some of her symptoms are falling into that category too.

(, so he

> wants to rule out EVERYTHING he can.

>

> So..in a nutshell, we still have no answers and another 6 mt

script for

> Motrin, but in a little higher dose.

> Soooo... as soon as I find out more I will fill ya's in.

>

> ( , 5 ,JRA, AkSp)

>

>

>

[Guest guest]

Absolutely we understand and believe me, we have all had those " bad

days " . Not for one second did I not wish it was me who walked with a

limp and couldn't play baseball instead of when he was at his

worst. I had and still have my share of those bad days when I felt

totally useless to help my child. I think many people here feel the

same. Hugs to you, Michele (19,spondy)

________________________________

From: [mailto: ] On

Behalf Of naturesnotionsnj@...

Sent: Friday, June 23, 2006 10:33 AM

Subject: Re: Re: 's Rhuemy Appt

Thank you everyone for you prayers and well wishes.

I made the mistake of posting an update on to one of my other

groups

and just got yelled at!( and I sent them the SAME EXACT post that I sent

to

this group)

Because I said that I was having a bad day. I didn't mean that I

personally

was having a rotten day because of having to take her to the dr's, I

meant

that I was having a bad day because one of my babies was hurting and

NOTHING

that I did was able to help her.

I was having a bad day because my daughter, who was up and running

around 24

hrs previously was now in such pain that she wasn't even able to stand

up,

and that was breaking my heart.

I was told that I was being selfish and maybe I should try putting

myself in

her shoes for a day. Believe me, if there were a way to, I would! I

would

take 's place for any length of time that we needed. whether it

was just

for a few hours, or months.

Sorry to vent, but at least I know you guys understand!

(

( , 5 ,JRA, AkSp)

[Guest guest]

, You go ahead and vent all you want!!!!! (I certainly have from time to

time!) I can't STAND the way people act sometimes!! You have every right to have

a bad day! It is soooo hard to see your own child hurting and of course it will

affect you! I pray that things get much better for you and . ----

& Elaney(12 poly)

naturesnotionsnj@... wrote: Thank you everyone for you prayers and

well wishes.

I made the mistake of posting an update on to one of my other groups

and just got yelled at!( and I sent them the SAME EXACT post that I sent to

this group)

Because I said that I was having a bad day. I didn't mean that I personally

was having a rotten day because of having to take her to the dr's, I meant

that I was having a bad day because one of my babies was hurting and NOTHING

that I did was able to help her.

I was having a bad day because my daughter, who was up and running around 24

hrs previously was now in such pain that she wasn't even able to stand up,

and that was breaking my heart.

I was told that I was being selfish and maybe I should try putting myself in

her shoes for a day. Believe me, if there were a way to, I would! I would

take 's place for any length of time that we needed. whether it was just

for a few hours, or months.

Sorry to vent, but at least I know you guys understand!

(

( , 5 ,JRA, AkSp)

[Guest guest]

Michele that is horrible. Isn't that just the last thing you need

when your already dealing with a difficult day!

I have to say that I don't know what makes this group so comfortable

and so safe, but it just is.

There have certainly been times when I no people have disagreed with

me but they provide their opinions, suggestions and support in such

a way that I accept it and have never felt belittled or chastized.

Sorry you had to deal with that I know that you can always vent here

and it people will understand...we all need to do that from time to

time.

(Aundrea 10 systemic)-

-- In , naturesnotionsnj@... wrote:

>

> Thank you everyone for you prayers and well wishes.

> I made the mistake of posting an update on to one of my

other groups

> and just got yelled at!( and I sent them the SAME EXACT post that

I sent to

> this group)

>

> Because I said that I was having a bad day. I didn't mean that I

personally

> was having a rotten day because of having to take her to the dr's,

I meant

> that I was having a bad day because one of my babies was hurting

and NOTHING

> that I did was able to help her.

> I was having a bad day because my daughter, who was up and running

around 24

> hrs previously was now in such pain that she wasn't even able to

stand up,

> and that was breaking my heart.

> I was told that I was being selfish and maybe I should try

putting myself in

> her shoes for a day. Believe me, if there were a way to, I would!

I would

> take 's place for any length of time that we needed.

whether it was just

> for a few hours, or months.

>

> Sorry to vent, but at least I know you guys understand!

> (

> ( , 5 ,JRA, AkSp)

>

>

>

[Guest guest]

Michele,

I am behind on posts - so this is another day, but I just wanted to agree with

. How horrible that someone should add to your pain and frustration.

(Sounds like someone else was having a bad day!) - I would think that anyone who

has the need for a group such as this would have understood what you meant.

Anyday my child is in pain is a bad day for me. And like just about every

parent I know who has a child with a chronic illness, I would take it from him

in a heartbeat, given the opportunity. You don't need to explain your bad day to

us sweetie, we get it. But, of course - explain to your heart's content, vent

to your heart's content - the good, the bad, and the ugly (I think that was the

subject line on one of my posts a couple of years ago, now that I think about

it) - anyway - share all that you want or need to - we are here for you. When I

am less frazzled and have more time I have been known to write about some of our

days with ridiculous detail just because I love to ramble, given the

opportunity. Hang in there - hugs to you and !

Val

Rob's Mom (8,systemic)

Re: 's Rhuemy Appt

Michele that is horrible. Isn't that just the last thing you need

when your already dealing with a difficult day!

I have to say that I don't know what makes this group so comfortable

and so safe, but it just is.

There have certainly been times when I no people have disagreed with

me but they provide their opinions, suggestions and support in such

a way that I accept it and have never felt belittled or chastized.

Sorry you had to deal with that I know that you can always vent here

and it people will understand...we all need to do that from time to

time.

(Aundrea 10 systemic)-

-- In , naturesnotionsnj@... wrote:

>

> Thank you everyone for you prayers and well wishes.

> I made the mistake of posting an update on to one of my

other groups

> and just got yelled at!( and I sent them the SAME EXACT post that

I sent to

> this group)

>

> Because I said that I was having a bad day. I didn't mean that I

personally

> was having a rotten day because of having to take her to the dr's,

I meant

> that I was having a bad day because one of my babies was hurting

and NOTHING

> that I did was able to help her.

> I was having a bad day because my daughter, who was up and running

around 24

> hrs previously was now in such pain that she wasn't even able to

stand up,

> and that was breaking my heart.

> I was told that I was being selfish and maybe I should try

putting myself in

> her shoes for a day. Believe me, if there were a way to, I would!

I would

> take 's place for any length of time that we needed.

whether it was just

> for a few hours, or months.

>

> Sorry to vent, but at least I know you guys understand!

> (

> ( , 5 ,JRA, AkSp)

>

>

>