Re: NIH Research - Who's In?

[Guest guest]

Kathy mentioned, " if they (NIH) get tons of people calling... " please

correct me if I'm wrong, but when I read over the docs that she

posted, it seemed to indicate that our doctors would have to fill out

the forms and then they or we would send them into the NIH. I intend

to ask my doctors (the neurologist and my regular doctor, both) to

fill out this paperwork, as it won't hurt to ask (plead, actually).

But something tells me that they won't take the time to do it. Both

doctors are overbooked and aren't even available to talk if I call

with a question. That's the case with most docs these days. Only

an occasional dentist has taken the time to return my call

personally, while most doctors have little time for the niceties and

personalized attention that go beyond the initial visit. So... I'm

worried that most docs are the same way and will not submit our

paperwork.

We'll see and I'll still try, but if it was a matter of a quick phone

call to the NIH, it would be much easier and have more likelihood of

actually happening. So my question is:

Is there a number we (or our doctors or both) can CALL the NIH about

this?

CARRIE

>

> I just hope they realize how serious this is. If they get tons of

people

> calling--how can they deny us?

>

> Take care--

> Kathy

> Re: NIH Research - Who's In?

>

>

> Hadn't seen it before today Kathy -

> I called and gave a ton of info. I made an appt with my Dr. to

have

> her complete the form. Outstanding! Positive action!!!

> Thank you so much for everything you do for us and thank you

> especially for what you do for your daughter.

>

> >

> >

> > RE: Getting better

> >

> >

> >

> > I am really surprised that I haven't gotten but 5 responses to

> the NIH

> > research posting. I would think that more people would be

> interested in

> > possibly finding a cure.

> >

> > The NIH is federally funded--therefore if you pay taxes you

> deserve for

> > them to find answers to make your life better. We should all be

> demanding

> > that they research this condition!

> >

> > There is power in numbers. If only 5 of us apply they will just

> write us

> > off. But if we all make ourselves known then how could they

> ignore us?

> >

> > Maybe no one has been on the board or something. It just really

> concerns

> > me that I haven't heard more interest about it.

> >

> > I would do anything to find answers about this condition for my

> > daughter--I hope you guys want it badly also. I know that it

> sounds like it

> > a lot of work to find a doctor to refer you, but you all seem

like

> you would

> > want to try. And if the application process doesn't work, we

> could go to

> > the hospital and protest--maybe this would get us media

coverage.

> I mean we

> > have a right to protest that we pay taxes and aren't getting

help

> from our

> > government!

> >

> > Oh well--I'll just hope not many people have read my postings

> yet.

> >

> > Kathy

> >

>

[Guest guest]

I'm calling today 1- NIH Undiagnosed diseases program!!!

> >

> > I just hope they realize how serious this is. If they get tons

of

> people

> > calling--how can they deny us?

> >

> > Take care--

> > Kathy

> > Re: NIH Research - Who's In?

> >

> >

> > Hadn't seen it before today Kathy -

> > I called and gave a ton of info. I made an appt with my Dr. to

> have

> > her complete the form. Outstanding! Positive action!!!

> > Thank you so much for everything you do for us and thank you

> > especially for what you do for your daughter.

> >

> > >

> > >

> > > RE: Getting better

> > >

> > >

> > >

> > > I am really surprised that I haven't gotten but 5 responses to

> > the NIH

> > > research posting. I would think that more people would be

> > interested in

> > > possibly finding a cure.

> > >

> > > The NIH is federally funded--therefore if you pay taxes you

> > deserve for

> > > them to find answers to make your life better. We should all

be

> > demanding

> > > that they research this condition!

> > >

> > > There is power in numbers. If only 5 of us apply they will

just

> > write us

> > > off. But if we all make ourselves known then how could they

> > ignore us?

> > >

> > > Maybe no one has been on the board or something. It just

really

> > concerns

> > > me that I haven't heard more interest about it.

> > >

> > > I would do anything to find answers about this condition for

my

> > > daughter--I hope you guys want it badly also. I know that it

> > sounds like it

> > > a lot of work to find a doctor to refer you, but you all seem

> like

> > you would

> > > want to try. And if the application process doesn't work, we

> > could go to

> > > the hospital and protest--maybe this would get us media

> coverage.

> > I mean we

> > > have a right to protest that we pay taxes and aren't getting

> help

> > from our

> > > government!

> > >

> > > Oh well--I'll just hope not many people have read my postings

> > yet.

> > >

> > > Kathy

> > >

> >

>

[Guest guest]

Oh Pia I am so sorry that you are having to deal with this. It just

adds to the anxiety and horror that 4S already makes you deal with.

I know you said you wouldn't do anything and I'm glad because I don't

even think suicide would open people's eyes on this one. WE are all

on your side! Too bad we all can't come to your workplace and picket

on your behalf. That or punch your boss (and the lady that bugs you)

in the face! Hang in there. Like others have said, maybe this

is going to open a new door for you.

Darlene

>> Hi, Kathy (and everyone) -- I am absolutely going to take

action on the NIH information you found for us! Sorry to not respond

before this. The reason I didn't, and the reason I don't post much

generally, is because I read the digests through the e-mail account I

use most, but respond via another. I am VERY careful about using my

real name online, and " Hope for Silence " is obviously not my real

name. And it's fairly cumbersome to read a digest post, sign out,

sign back in under a different account, locate that post, and respond

while at work (which is where I usually read the digests). But I do

read everyone's posts almost every day.> The psychiatrist I'm working

with on meds to deal with my 4S is young and open-minded, and I think

he may very well get on board with the NIH research program. Sometime

in the next handfuil of days I'm going to print out those files of

yours, Kathy, review them carefully to see exactly what I need to do,

and contact the psychiatrist to get started on the process. I think

you're right--chances of getting into the program look very slim, but

if the NIH is suddenly inundated with requests from all of us, the

chance that at least *one* of us is chosen will be much greater.> Oh,

and regarding the Dr. Phil/Oprah shows, I'll just chime in and say

that I'd be more than willing to appear on either of those, too.>

It's time I checked in regarding the medications I'm using and how

they're working . . . I'll post that in a few minutes.> Thanks,

Kathy, and everyone else, for carrying the 4S banner so diligently!> -

Hope> > > > Re: How do we get better?> > > I'm

using white noise generators to get desensitized, but I'll need them

(and my earplugs) all my life, and it's not a cure, since a cure does

not exist, and there's no way to get rid of 4S. > > I don't know if

any of us can get " better " , but we're trying.> > http://www.hyperacu

sis.org/default. php Is this the site you looked at?> > > = M-F.>

(PS: OMGYEY someone who knows the difference between " eager "

and " anxious " ! I bloody love you!)> > > > Does anyone know how we

can get rid of this crazy thing we suffer from > > every day? When I

first read about Soft Sound Sensitivity Syndromea few > > weeks

back,I was thrilled that the Oregon Tinnitus & Hyperacusis > >

Treatment Clinic could make me ear implants to manage this. I did not

> > print that particular part of the website and now that info is no

> > longer there. I have left messages and sent e-mails. I was called

by > > one employee who did not know what I was referring to. Has

anyone got > > help specifically for Soft Sound Sensitivity Syndrome?

I am not > > referring to what worked for you like acupuncture or

therapy, I want to > > know if anyone has gotten help from Dr.

and her clinic, the > > woman who created this group for us.

Please let me know if u know how I > > can get help from her. I am

very eager to start getting better.>

>

>

>

>

>

>

> _________________________________________________________________

> Time for vacation? WIN what you need- enter now!

> http://www.gowindowslive.com/summergiveaway/?ocid=tag_jlyhm

>

[Guest guest]

thanks so much!! you are funny!!!!! love you!!!

To: Soundsensitivity From: gizziecookie@...Date: Thu, 31 Jul 2008 05:58:54 +0000Subject: Re: NIH Research - Who's In?

Oh Pia I am so sorry that you are having to deal with this. It just adds to the anxiety and horror that 4S already makes you deal with. I know you said you wouldn't do anything and I'm glad because I don't even think suicide would open people's eyes on this one. WE are all on your side! Too bad we all can't come to your workplace and picket on your behalf. That or punch your boss (and the lady that bugs you) in the face! Hang in there. Like others have said, maybe this is going to open a new door for you. Darlene>> Hi, Kathy (and everyone) -- I am absolutely going to take action on the NIH information you found for us! Sorry to not respond before this. The reason I didn't, and the reason I don't post much generally, is because I read the digests through the e-mail account I use most, but respond via another. I am VERY careful about using my real name online, and "Hope for Silence" is obviously not my real name. And it's fairly cumbersome to read a digest post, sign out, sign back in under a different account, locate that post, and respond while at work (which is where I usually read the digests). But I do read everyone's posts almost every day.> The psychiatrist I'm working with on meds to deal with my 4S is young and open-minded, and I think he may very well get on board with the NIH research program. Sometime in the next handfuil of days I'm going to print out those files of yours, Kathy, review them carefully to see exactly what I need to do, and contact the psychiatrist to get started on the process. I think you're right--chances of getting into the program look very slim, but if the NIH is suddenly inundated with requests from all of us, the chance that at least *one* of us is chosen will be much greater.> Oh, and regarding the Dr. Phil/Oprah shows, I'll just chime in and say that I'd be more than willing to appear on either of those, too.> It's time I checked in regarding the medications I'm using and how they're working . . . I'll post that in a few minutes.> Thanks, Kathy, and everyone else, for carrying the 4S banner so diligently!> -Hope> > > > Re: How do we get better?> > > I'm using white noise generators to get desensitized, but I'll need them (and my earplugs) all my life, and it's not a cure, since a cure does not exist, and there's no way to get rid of 4S. > > I don't know if any of us can get "better", but we're trying.> > http://www.hyperacu sis.org/default. php Is this the site you looked at?> > > = M-F.> (PS: OMGYEY someone who knows the difference between "eager" and "anxious"! I bloody love you!)> > > > Does anyone know how we can get rid of this crazy thing we suffer from > > every day? When I first read about Soft Sound Sensitivity Syndromea few > > weeks back,I was thrilled that the Oregon Tinnitus & Hyperacusis > > Treatment Clinic could make me ear implants to manage this. I did not > > print that particular part of the website and now that info is no > > longer there. I have left messages and sent e-mails. I was called by > > one employee who did not know what I was referring to. Has anyone got > > help specifically for Soft Sound Sensitivity Syndrome? I am not > > referring to what worked for you like acupuncture or therapy, I want to > > know if anyone has gotten help from Dr. and her clinic, the > > woman who created this group for us. Please let me know if u know how I > > can get help from her. I am very eager to start getting better.>> > > > > > > __________________________________________________________> Time for vacation? WIN what you need- enter now!> http://www.gowindowslive.com/summergiveaway/?ocid=tag_jlyhm> Keep your kids safer online with Windows Live Family Safety. Help protect your kids.

[Guest guest]

anyone watch Big Brother lately, well, she is exactly like Libra!

In your face!!!

To: soundsensitivity From: pialevensteins@...Date: Thu, 31 Jul 2008 08:46:41 -0400Subject: RE: Re: NIH Research - Who's In?

thanks so much!! you are funny!!!!! love you!!!

To: Soundsensitivity From: gizziecookieDate: Thu, 31 Jul 2008 05:58:54 +0000Subject: Re: NIH Research - Who's In?

Oh Pia I am so sorry that you are having to deal with this. It just adds to the anxiety and horror that 4S already makes you deal with. I know you said you wouldn't do anything and I'm glad because I don't even think suicide would open people's eyes on this one. WE are all on your side! Too bad we all can't come to your workplace and picket on your behalf. That or punch your boss (and the lady that bugs you) in the face! Hang in there. Like others have said, maybe this is going to open a new door for you. Darlene>> Hi, Kathy (and everyone) -- I am absolutely going to take action on the NIH information you found for us! Sorry to not respond before this. The reason I didn't, and the reason I don't post much generally, is because I read the digests through the e-mail account I use most, but respond via another. I am VERY careful about using my real name online, and "Hope for Silence" is obviously not my real name. And it's fairly cumbersome to read a digest post, sign out, sign back in under a different account, locate that post, and respond while at work (which is where I usually read the digests). But I do read everyone's posts almost every day.> The psychiatrist I'm working with on meds to deal with my 4S is young and open-minded, and I think he may very well get on board with the NIH research program. Sometime in the next handfuil of days I'm going to print out those files of yours, Kathy, review them carefully to see exactly what I need to do, and contact the psychiatrist to get started on the process. I think you're right--chances of getting into the program look very slim, but if the NIH is suddenly inundated with requests from all of us, the chance that at least *one* of us is chosen will be much greater.> Oh, and regarding the Dr. Phil/Oprah shows, I'll just chime in and say that I'd be more than willing to appear on either of those, too.> It's time I checked in regarding the medications I'm using and how they're working . . . I'll post that in a few minutes.> Thanks, Kathy, and everyone else, for carrying the 4S banner so diligently!> -Hope> > > > Re: How do we get better?> > > I'm using white noise generators to get desensitized, but I'll need them (and my earplugs) all my life, and it's not a cure, since a cure does not exist, and there's no way to get rid of 4S. > > I don't know if any of us can get "better", but we're trying.> > http://www.hyperacu sis.org/default. php Is this the site you looked at?> > > = M-F.> (PS: OMGYEY someone who knows the difference between "eager" and "anxious"! I bloody love you!)> > > > Does anyone know how we can get rid of this crazy thing we suffer from > > every day? When I first read about Soft Sound Sensitivity Syndromea few > > weeks back,I was thrilled that the Oregon Tinnitus & Hyperacusis > > Treatment Clinic could make me ear implants to manage this. I did not > > print that particular part of the website and now that info is no > > longer there. I have left messages and sent e-mails. I was called by > > one employee who did not know what I was referring to. Has anyone got > > help specifically for Soft Sound Sensitivity Syndrome? I am not > > referring to what worked for you like acupuncture or therapy, I want to > > know if anyone has gotten help from Dr. and her clinic, the > > woman who created this group for us. Please let me know if u know how I > > can get help from her. I am very eager to start getting better.>> > > > > > > __________________________________________________________> Time for vacation? WIN what you need- enter now!> http://www.gowindowslive.com/summergiveaway/?ocid=tag_jlyhm>

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