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Re: Off the Imuran

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Sharyn, Oh I'm so glad to hear that they found out what the problem was. I

was an unfortunate one too that wasn't able to take Imuran. I thought I was

the only one who had a reaction to it. It made me sooo sick I wanted to die.

I thought it was just in my head, sorry you couldn't take it but glad to see

I'm not alone.

I am going through the same thing with the Plaquenil now. Trying to see if

that is what is making me sick. Boy this game of musical meds isn't fun huh?

I hope they can get you on something that really works for you. I had to

raise my pred up again too.

I'm with you. I want to go back to all the drs that told me to go home and

eat some chicken soup, or reflect on my stress from the day and tell them a

thing or two.

Can't wait til the Brochures for the Foundation are out and we can bombard

the medical professional and help to educate them.

As for the chemicals. We did a lot of polls a while back. i think the main

thing that we found that we had in common was insecticides, toxic chemicals (

a lot of hobbists working with strong glue). Would be interesting to try a

new poll since we have so many new members.

We will never give up and will find the missing link one day.

Thanks for letting us know how you are. I was really getting worried about

you.

hugs

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Thanks for caring...heck thanks for everyone caring. Really nice to

have people who really understand what we are going through.

As for that poll...Hold on until I can get that sheet that tells

what Silicone is composed of. You'll all drop dead when you read it

and seeing what went into making those implants. I mean if I had

know that I would have never gotten implants. Will scare the hell

out of you.

I realize that RP is rare...however I know of at least 3 and a

possible 4th persone who were exposed to silicone that have or may

have RP. I know there are others out there and I am in the process

of tring to find them who may not know they have RP. Heck...look at

me. I went 6 years witht he symptoms and didn't know so I'll bet

there are other women like me who have the same symptoms too. That

would help in the reasearch or study of this.

I think..or hope that I still have my implants that were removed.

Pathology said they would keep them forever. Think I'll call and

see if they still have them and perhaps go get them. I think they

may come in handy for one of the studies.

Well just let me know what I can do . Am up and down like

the rest so there may be days no one will see or hear from me. Know

you and the others understand.

Well must run

Hugs

Sharyn

> Sharyn, Oh I'm so glad to hear that they found out what the

problem was. I

> was an unfortunate one too that wasn't able to take Imuran. I

thought I was

> the only one who had a reaction to it. It made me sooo sick I

wanted to die.

> I thought it was just in my head, sorry you couldn't take it but

glad to see

> I'm not alone.

>

> I am going through the same thing with the Plaquenil now. Trying

to see if

> that is what is making me sick. Boy this game of musical meds

isn't fun huh?

>

>

> I hope they can get you on something that really works for you. I

had to

> raise my pred up again too.

>

> I'm with you. I want to go back to all the drs that told me to

go home and

> eat some chicken soup, or reflect on my stress from the day and

tell them a

> thing or two.

>

> Can't wait til the Brochures for the Foundation are out and we can

bombard

> the medical professional and help to educate them.

>

> As for the chemicals. We did a lot of polls a while back. i

think the main

> thing that we found that we had in common was insecticides, toxic

chemicals (

> a lot of hobbists working with strong glue). Would be interesting

to try a

> new poll since we have so many new members.

>

> We will never give up and will find the missing link one day.

>

> Thanks for letting us know how you are. I was really getting

worried about

> you.

>

> hugs

>

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In a message dated 3/14/02 4:53:41 AM Pacific Standard Time,

sharynn@... writes:

<<

Well just let me know what I can do . Am up and down like

the rest so there may be days no one will see or hear from me. Know

you and the others understand.

>>

Sharyn, YOu know we will all understand. WE are all in the same boat. Some

days good, some bad. Just don't be gone too long without letting us know or

we will start the worry brigade! LOL

hugs

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