Re: Working together to get recognition of this disorder

[Guest guest]

Please search the site for info on NIH. We have already contacted them and they are just waiting for us to apply to their Undiagnosed Diseases Program. So basically we are half way there--we just need people to apply!

I would have thought that this possibility would really excite people on this site, but so far I think only 10 of us have done anything about it.

The process entails getting a letter of referral from a doctor and then sending in a personal letter with any important medical tests, etc.

I contacted the NIH about this since most doctors don't believe it needs research--they feel it's just psychological. Colleen at the NIH told me that the doctor doesn't have to say that they believe it needs research, they just have to agree to treat you in the case that you need some sort of medical treatment after the research (i.e. a tumor or something). It is really just protocol. The doctor could say he thinks you are a hypochondriac--he just needs to say he'll do follow up treatment if needed.

I had a very difficult time getting the doctor's letter. She was the nastiest woman you could ever imagine! But she wrote me one and now I am sending it.

The main thing is that the NIH get bombarded with so many applications regarding this condition that they can't ignore it. We already sent them our stories via email. Colleen at the NIH said that this really piqued the doctors' interest because of all the similarities of onset and symptoms within our stories.

Please let me know if you need more info about it. This is an amazing opportunity that apparently only 10 of us on the group realize.

So many times I hear "I would do anything to find answers and relief from this horrible condition" but then when an opportunity arises, no one shows up.

There is also another doctor at the House Ear Institute in CA who is very interested in studying it. He even talked with Dr. about it. But we need to apply for a grant for about $2 million. I really want to start the grant application process, but then think that even if we get it, will anyone take the effort to be studied??

We have 800+ people on this site. I know that many are in the UK and abroad. But if there was any chance of research I would hope that most would do anything to step up and do it!! Airline tickets are expensive, but don't you think it is worth it--a cure????

Just frustrated...

Let me know if you need more info or anything. It's all in past postings.

Thanks,

Kathy Howe

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of foodrageSent: Sunday, October 12, 2008 5:17 PMTo: Soundsensitivity Subject: Working together to get recognition of this disorder

Hi Jerry,I have suffered from an irrational anger response to the sound ofpeople eating, chewing gum, tapping pencils etc. for about 25 years. Ionly recently (about a week ago) discovered that I am not alone inthis disorder and that, in fact, it is a true disorder (not just mebeing crazy).I love the idea of pursuing research into this condition and suspectthat many people in this group would be willing to participiate. Ihave a strong background in research though my current work is in thearea of bone biology, so is not particularly well suited toresearching our disorder. But I'm certainly willing to talk more aboutthis with anyone interested in putting the time and energy in topursue it.As you point out, one of our top priorities should also be to get ourcondition recognized by the medical establishment. Who knows how manymore people there are out there who suffer from this condition alonebecause health care providers do not realize this is an actual entity.An established diagnosis would also help for insurance coverage forpotential treatments as well as for communication with bosses/coworkers.I am willing to work with you (or other sufferers) to look into howthis might be accomplished. I am not sure where to start but perhapswe could contact the AMA, NIH, APA to find out how a new diseasebecomes accepted as an entity? Nan

[Guest guest]

Kathy:

I can't speak for everyone else here, but as for me, I did approach

my doctor for a letter and he blew me off. It's been months since I

first asked him. And he's done nothing. I asked him to copy me on

the letter if he wrote it, but I've not heard and since I cannot even

speak to him if I call (have to set up an appt that costs me more

money out of my pocket), I'm giving up on him. I will find a new doc

that is hopefully more supportive. I already called around and have

an appt with both a ENT doc and a psychiatrist. Between the two of

them, I'm hoping one will be willing to write that letter to NIH. We

all need to find someone willing to listen to and write that letter

on our behalf.

>

> Please search the site for info on NIH. We have already contacted

them and

> they are just waiting for us to apply to their Undiagnosed Diseases

Program.

> So basically we are half way there--we just need people to apply!

>

> I would have thought that this possibility would really excite

people on

> this site, but so far I think only 10 of us have done anything

about it.

>

> The process entails getting a letter of referral from a doctor and

then

> sending in a personal letter with any important medical tests, etc.

>

> I contacted the NIH about this since most doctors don't believe it

needs

> research--they feel it's just psychological. Colleen at the NIH

told me

> that the doctor doesn't have to say that they believe it needs

research,

> they just have to agree to treat you in the case that you need some

sort of

> medical treatment after the research (i.e. a tumor or something).

It is

> really just protocol. The doctor could say he thinks you are a

> hypochondriac--he just needs to say he'll do follow up treatment if

needed.

>

> I had a very difficult time getting the doctor's letter. She was

the

> nastiest woman you could ever imagine! But she wrote me one and

now I am

> sending it.

>

> The main thing is that the NIH get bombarded with so many

applications

> regarding this condition that they can't ignore it. We already

sent them

> our stories via email. Colleen at the NIH said that this really

piqued the

> doctors' interest because of all the similarities of onset and

symptoms

> within our stories.

>

> Please let me know if you need more info about it. This is an

amazing

> opportunity that apparently only 10 of us on the group realize.

>

> So many times I hear " I would do anything to find answers and

relief from

> this horrible condition " but then when an opportunity arises, no

one shows

> up.

>

> There is also another doctor at the House Ear Institute in CA who

is very

> interested in studying it. He even talked with Dr. about

it. But

> we need to apply for a grant for about $2 million. I really want

to start

> the grant application process, but then think that even if we get

it, will

> anyone take the effort to be studied??

>

> We have 800+ people on this site. I know that many are in the UK

and

> abroad. But if there was any chance of research I would hope that

most

> would do anything to step up and do it!! Airline tickets are

expensive, but

> don't you think it is worth it--a cure????

>

> Just frustrated...

>

> Let me know if you need more info or anything. It's all in past

postings.

>

> Thanks,

> Kathy Howe

>

> Working together to get recognition

of this

> disorder

>

>

> Hi Jerry,

>

> I have suffered from an irrational anger response to the sound of

> people eating, chewing gum, tapping pencils etc. for about 25

years. I

> only recently (about a week ago) discovered that I am not alone in

> this disorder and that, in fact, it is a true disorder (not just

me

> being crazy).

>

> I love the idea of pursuing research into this condition and

suspect

> that many people in this group would be willing to participiate. I

> have a strong background in research though my current work is in

the

> area of bone biology, so is not particularly well suited to

> researching our disorder. But I'm certainly willing to talk more

about

> this with anyone interested in putting the time and energy in to

> pursue it.

>

> As you point out, one of our top priorities should also be to get

our

> condition recognized by the medical establishment. Who knows how

many

> more people there are out there who suffer from this condition

alone

> because health care providers do not realize this is an actual

entity.

> An established diagnosis would also help for insurance coverage

for

> potential treatments as well as for communication with

bosses/coworkers.

>

> I am willing to work with you (or other sufferers) to look into

how

> this might be accomplished. I am not sure where to start but

perhaps

> we could contact the AMA, NIH, APA to find out how a new disease

> becomes accepted as an entity?

>

> Nan

>

[Guest guest]

Hi,

I have been to our doctor here in Spain but unfortunately they did

not have a clue what we were talking about had never heard of

anything like it and sent us away with medicine for a temperature.

So i do not think they would be interested in treating us here in

Spain so i am sorry that i have not applied to the NIH

So i am not really sure what else i am able to do.

Many thanks

Bettis on behalf on my daughter Primrose

>

> Please search the site for info on NIH. We have already contacted

them and

> they are just waiting for us to apply to their Undiagnosed Diseases

Program.

> So basically we are half way there--we just need people to apply!

>

> I would have thought that this possibility would really excite

people on

> this site, but so far I think only 10 of us have done anything

about it.

>

> The process entails getting a letter of referral from a doctor and

then

> sending in a personal letter with any important medical tests, etc.

>

> I contacted the NIH about this since most doctors don't believe it

needs

> research--they feel it's just psychological. Colleen at the NIH

told me

> that the doctor doesn't have to say that they believe it needs

research,

> they just have to agree to treat you in the case that you need some

sort of

> medical treatment after the research (i.e. a tumor or something).

It is

> really just protocol. The doctor could say he thinks you are a

> hypochondriac--he just needs to say he'll do follow up treatment if

needed.

>

> I had a very difficult time getting the doctor's letter. She was

the

> nastiest woman you could ever imagine! But she wrote me one and

now I am

> sending it.

>

> The main thing is that the NIH get bombarded with so many

applications

> regarding this condition that they can't ignore it. We already

sent them

> our stories via email. Colleen at the NIH said that this really

piqued the

> doctors' interest because of all the similarities of onset and

symptoms

> within our stories.

>

> Please let me know if you need more info about it. This is an

amazing

> opportunity that apparently only 10 of us on the group realize.

>

> So many times I hear " I would do anything to find answers and

relief from

> this horrible condition " but then when an opportunity arises, no

one shows

> up.

>

> There is also another doctor at the House Ear Institute in CA who

is very

> interested in studying it. He even talked with Dr. about

it. But

> we need to apply for a grant for about $2 million. I really want

to start

> the grant application process, but then think that even if we get

it, will

> anyone take the effort to be studied??

>

> We have 800+ people on this site. I know that many are in the UK

and

> abroad. But if there was any chance of research I would hope that

most

> would do anything to step up and do it!! Airline tickets are

expensive, but

> don't you think it is worth it--a cure????

>

> Just frustrated...

>

> Let me know if you need more info or anything. It's all in past

postings.

>

> Thanks,

> Kathy Howe

>

> Working together to get recognition

of this

> disorder

>

>

> Hi Jerry,

>

> I have suffered from an irrational anger response to the sound of

> people eating, chewing gum, tapping pencils etc. for about 25

years. I

> only recently (about a week ago) discovered that I am not alone in

> this disorder and that, in fact, it is a true disorder (not just

me

> being crazy).

>

> I love the idea of pursuing research into this condition and

suspect

> that many people in this group would be willing to participiate. I

> have a strong background in research though my current work is in

the

> area of bone biology, so is not particularly well suited to

> researching our disorder. But I'm certainly willing to talk more

about

> this with anyone interested in putting the time and energy in to

> pursue it.

>

> As you point out, one of our top priorities should also be to get

our

> condition recognized by the medical establishment. Who knows how

many

> more people there are out there who suffer from this condition

alone

> because health care providers do not realize this is an actual

entity.

> An established diagnosis would also help for insurance coverage

for

> potential treatments as well as for communication with

bosses/coworkers.

>

> I am willing to work with you (or other sufferers) to look into

how

> this might be accomplished. I am not sure where to start but

perhaps

> we could contact the AMA, NIH, APA to find out how a new disease

> becomes accepted as an entity?

>

> Nan

>

[Guest guest]

What can I do? I've never told a medical practitioner about this problem, except in terms of my anxiety and being easily irritated. I myself (a highly educated and well-read individual who is excessively proactive in self-care) had never heard of this disorder prior to last Sat.

I would love to get this problem recognized and researched. Gwin

RE: Working together to get recognition of this disorder

Please search the site for info on NIH. We have already contacted them and they are just waiting for us to apply to their Undiagnosed Diseases Program. So basically we are half way there--we just need people to apply!

I would have thought that this possibility would really excite people on this site, but so far I think only 10 of us have done anything about it.

The process entails getting a letter of referral from a doctor and then sending in a personal letter with any important medical tests, etc.

I contacted the NIH about this since most doctors don't believe it needs research--they feel it's just psychological. Colleen at the NIH told me that the doctor doesn't have to say that they believe it needs research, they just have to agree to treat you in the case that you need some sort of medical treatment after the research (i.e. a tumor or something). It is really just protocol. The doctor could say he thinks you are a hypochondriac--he just needs to say he'll do follow up treatment if needed.

I had a very difficult time getting the doctor's letter. She was the nastiest woman you could ever imagine! But she wrote me one and now I am sending it.

The main thing is that the NIH get bombarded with so many applications regarding this condition that they can't ignore it. We already sent them our stories via email. Colleen at the NIH said that this really piqued the doctors' interest because of all the similarities of onset and symptoms within our stories.

Please let me know if you need more info about it. This is an amazing opportunity that apparently only 10 of us on the group realize.

So many times I hear "I would do anything to find answers and relief from this horrible condition" but then when an opportunity arises, no one shows up.

There is also another doctor at the House Ear Institute in CA who is very interested in studying it. He even talked with Dr. about it. But we need to apply for a grant for about $2 million. I really want to start the grant application process, but then think that even if we get it, will anyone take the effort to be studied??

We have 800+ people on this site. I know that many are in the UK and abroad. But if there was any chance of research I would hope that most would do anything to step up and do it!! Airline tickets are expensive, but don't you think it is worth it--a cure????

Just frustrated...

Let me know if you need more info or anything. It's all in past postings.

Thanks,

Kathy Howe

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of foodrageSent: Sunday, October 12, 2008 5:17 PMTo: Soundsensitivity Subject: Working together to get recognition of this disorder

Hi Jerry,I have suffered from an irrational anger response to the sound ofpeople eating, chewing gum, tapping pencils etc. for about 25 years. Ionly recently (about a week ago) discovered that I am not alone inthis disorder and that, in fact, it is a true disorder (not just mebeing crazy).I love the idea of pursuing research into this condition and suspectthat many people in this group would be willing to participiate. Ihave a strong background in research though my current work is in thearea of bone biology, so is not particularly well suited toresearching our disorder. But I'm certainly willing to talk more aboutthis with anyone interested in putting the time and energy in topursue it.As you point out, one of our top priorities should also be to get ourcondition recognized by the medical establishment. Who knows how manymore people there are out there who suffer from this condition alonebecause health care providers do not realize this is an actual entity.An established diagnosis would also help for insurance coverage forpotential treatments as well as for communication with bosses/coworkers.I am willing to work with you (or other sufferers) to look into howthis might be accomplished. I am not sure where to start but perhapswe could contact the AMA, NIH, APA to find out how a new diseasebecomes accepted as an entity? Nan

[Guest guest]

Kathy

I haven't applied as I have assumed that they would not be interested in someone who doesn't live in the States. Am I wrong?

Guy

-----Original Message-----From: k.howe@...Sent: Tue, 14 Oct 2008 08:02:03 -0400To: soundsensitivity Subject: RE: Working together to get recognition of this disorder

Please search the site for info on NIH. We have already contacted them and they are just waiting for us to apply to their Undiagnosed Diseases Program. So basically we are half way there--we just need people to apply!

I would have thought that this possibility would really excite people on this site, but so far I think only 10 of us have done anything about it.

The process entails getting a letter of referral from a doctor and then sending in a personal letter with any important medical tests, etc.

I contacted the NIH about this since most doctors don't believe it needs research--they feel it's just psychological. Colleen at the NIH told me that the doctor doesn't have to say that they believe it needs research, they just have to agree to treat you in the case that you need some sort of medical treatment after the research (i.e. a tumor or something). It is really just protocol. The doctor could say he thinks you are a hypochondriac--he just needs to say he'll do follow up treatment if needed.

I had a very difficult time getting the doctor's letter. She was the nastiest woman you could ever imagine! But she wrote me one and now I am sending it.

The main thing is that the NIH get bombarded with so many applications regarding this condition that they can't ignore it. We already sent them our stories via email. Colleen at the NIH said that this really piqued the doctors' interest because of all the similarities of onset and symptoms within our stories.

Please let me know if you need more info about it. This is an amazing opportunity that apparently only 10 of us on the group realize.

So many times I hear "I would do anything to find answers and relief from this horrible condition" but then when an opportunity arises, no one shows up.

There is also another doctor at the House Ear Institute in CA who is very interested in studying it. He even talked with Dr. about it. But we need to apply for a grant for about $2 million. I really want to start the grant application process, but then think that even if we get it, will anyone take the effort to be studied??

We have 800+ people on this site. I know that many are in the UK and abroad. But if there was any chance of research I would hope that most would do anything to step up and do it!! Airline tickets are expensive, but don't you think it is worth it--a cure????

Just frustrated...

Let me know if you need more info or anything. It's all in past postings.

Thanks,

Kathy Howe

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of foodrageSent: Sunday, October 12, 2008 5:17 PMTo: Soundsensitivity Subject: Working together to get recognition of this disorder

Hi Jerry,I have suffered from an irrational anger response to the sound ofpeople eating, chewing gum, tapping pencils etc. for about 25 years. Ionly recently (about a week ago) discovered that I am not alone inthis disorder and that, in fact, it is a true disorder (not just mebeing crazy).I love the idea of pursuing research into this condition and suspectthat many people in this group would be willing to participiate. Ihave a strong background in research though my current work is in thearea of bone biology, so is not particularly well suited toresearching our disorder. But I'm certainly willing to talk more aboutthis with anyone interested in putting the time and energy in topursue it.As you point out, one of our top priorities should also be to get ourcondition recognized by the medical establishment. Who knows how manymore people there are out there who suffer from this condition alonebecause health care providers do not realize this is an actual entity.An established diagnosis would also help for insurance coverage forpotential treatments as well as for communication with bosses/coworkers.I am willing to work with you (or other sufferers) to look into howthis might be accomplished. I am not sure where to start but perhapswe could contact the AMA, NIH, APA to find out how a new diseasebecomes accepted as an entity? Nan

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[Guest guest]

Everyone on this site--

I liken our situation to this: If someone told you that you could have 10 million dollars but you had to do a few things first and it might cost you time and money, how many people wouldn't do it? I'm sure most people would do anything they had to. They would fly across the world to claim it.

This is like our opportunity to get research done and possibly find a cure, or at least an official diagnosis. That would be priceless--and it's a very real opportunity.

It's hard if you haven't seen a doctor regarding this condition. However, if you go in and see them about it and tell them what we are trying to do. Then just tell them that they don't have to believe that you have anything wrong, just that they will treat you if you need follow up care. It should be no sweat of their nose. They can say they think you have an anxiety disorder, or are a hypochondriac, whatever. They just have to agree to treat you--it's just a formality. It's not like any regular doctor will ever be able to treat us for this--once the NIH finds the cause, they will set up with a doctor to find a cure or treatment, etc. This is just getting us the research.

Unfortunately many doctors are a pain and for whatever reason give you a hard time about referring you. The doctor I saw for my daughter diagnosed her with Anxiety Disorder without even seeing her. Then when we went in for the official office visit, she said that my daughter definitely had anxiety because she didn't like to drink milk and is small for her age. She was ridiculous!!! She kept insisting that it was psychological--we went around and around about 4s and doctors and many things--it got very heated. But you know what? She wrote me the letter. By the way, my daughter was very easy going at the visit and showed no apprehension during the visit--even when they wanted to do a blood test. So I find it amazing that this doctor said she had anxiety. Doctors can be so infuriating!! But who cares what they think of you--it's your life and it's worth stepping out of your comfort zone.

The NIH would be very interested in us if we would just try!!! If we could get 50-100 people to apply, then they couldn't ignore our numbers. They are already interersted and waiting to see us apply!! About 20 of us emailed them our stories and they were very interested. I guess they review the applications every quarter or so and choose the ones they are going to study. We need to use our numbers to our advantage!!

I know it's uncomfortable trying to get a doctor to write the letter--believe me, I had 3 visits of uncomfortable with my daughter's doctor! But I am determined. I would do it for 10 million dollars--so of course I'm going to do it for my daughter who I consider priceless!

So please--everyone--step out of your comfort zone and get the letter!

Then send in it along with your life story of 4s--when you got it, how it affects your daily life, if any relatives have it, etc.

Please let me know if you need me to send you the info on the doctor's letter and general instructions on applying. We need to get this done--let's strive for December.

Please let me know who does it so I can keep count. Email me at k.howe@... .

Also, keep me updated on those who have gotten responses after you apply.

Thanks,

Kathy

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of gwin1962@...Sent: Tuesday, October 14, 2008 2:18 PMTo: Soundsensitivity Subject: Re: Working together to get recognition of this disorder

What can I do? I've never told a medical practitioner about this problem, except in terms of my anxiety and being easily irritated. I myself (a highly educated and well-read individual who is excessively proactive in self-care) had never heard of this disorder prior to last Sat.

I would love to get this problem recognized and researched. Gwin

RE: Working together to get recognition of this disorder

Please search the site for info on NIH. We have already contacted them and they are just waiting for us to apply to their Undiagnosed Diseases Program. So basically we are half way there--we just need people to apply!

I would have thought that this possibility would really excite people on this site, but so far I think only 10 of us have done anything about it.

The process entails getting a letter of referral from a doctor and then sending in a personal letter with any important medical tests, etc.

I contacted the NIH about this since most doctors don't believe it needs research--they feel it's just psychological. Colleen at the NIH told me that the doctor doesn't have to say that they believe it needs research, they just have to agree to treat you in the case that you need some sort of medical treatment after the research (i.e. a tumor or something). It is really just protocol. The doctor could say he thinks you are a hypochondriac--he just needs to say he'll do follow up treatment if needed.

I had a very difficult time getting the doctor's letter. She was the nastiest woman you could ever imagine! But she wrote me one and now I am sending it.

The main thing is that the NIH get bombarded with so many applications regarding this condition that they can't ignore it. We already sent them our stories via email. Colleen at the NIH said that this really piqued the doctors' interest because of all the similarities of onset and symptoms within our stories.

Please let me know if you need more info about it. This is an amazing opportunity that apparently only 10 of us on the group realize.

So many times I hear "I would do anything to find answers and relief from this horrible condition" but then when an opportunity arises, no one shows up.

There is also another doctor at the House Ear Institute in CA who is very interested in studying it. He even talked with Dr. about it. But we need to apply for a grant for about $2 million. I really want to start the grant application process, but then think that even if we get it, will anyone take the effort to be studied??

We have 800+ people on this site. I know that many are in the UK and abroad. But if there was any chance of research I would hope that most would do anything to step up and do it!! Airline tickets are expensive, but don't you think it is worth it--a cure????

Just frustrated...

Let me know if you need more info or anything. It's all in past postings.

Thanks,

Kathy Howe

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of foodrageSent: Sunday, October 12, 2008 5:17 PMTo: Soundsensitivity Subject: Working together to get recognition of this disorder

Hi Jerry,I have suffered from an irrational anger response to the sound ofpeople eating, chewing gum, tapping pencils etc. for about 25 years. Ionly recently (about a week ago) discovered that I am not alone inthis disorder and that, in fact, it is a true disorder (not just mebeing crazy).I love the idea of pursuing research into this condition and suspectthat many people in this group would be willing to participiate. Ihave a strong background in research though my current work is in thearea of bone biology, so is not particularly well suited toresearching our disorder. But I'm certainly willing to talk more aboutthis with anyone interested in putting the time and energy in topursue it.As you point out, one of our top priorities should also be to get ourcondition recognized by the medical establishment. Who knows how manymore people there are out there who suffer from this condition alonebecause health care providers do not realize this is an actual entity.An established diagnosis would also help for insurance coverage forpotential treatments as well as for communication with bosses/coworkers.I am willing to work with you (or other sufferers) to look into howthis might be accomplished. I am not sure where to start but perhapswe could contact the AMA, NIH, APA to find out how a new diseasebecomes accepted as an entity? Nan

[Guest guest]

You might be right. I will call the 800 number and find out. However, even so, you could still send them your story to boost our numbers and make them realize how many of us are suffering with it. Plus, they can see that it is all over the world!

I'll let you know.

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of georgieporgieSent: Tuesday, October 14, 2008 3:48 PMTo: soundsensitivity Subject: RE: Working together to get recognition of this disorder

Kathy

I haven't applied as I have assumed that they would not be interested in someone who doesn't live in the States. Am I wrong?

Guy

-----Original Message-----From: k.howecomcast (DOT) netSent: Tue, 14 Oct 2008 08:02:03 -0400To: soundsensitivity Subject: RE: Working together to get recognition of this disorder

Please search the site for info on NIH. We have already contacted them and they are just waiting for us to apply to their Undiagnosed Diseases Program. So basically we are half way there--we just need people to apply!

I would have thought that this possibility would really excite people on this site, but so far I think only 10 of us have done anything about it.

The process entails getting a letter of referral from a doctor and then sending in a personal letter with any important medical tests, etc.

I contacted the NIH about this since most doctors don't believe it needs research--they feel it's just psychological. Colleen at the NIH told me that the doctor doesn't have to say that they believe it needs research, they just have to agree to treat you in the case that you need some sort of medical treatment after the research (i.e. a tumor or something). It is really just protocol. The doctor could say he thinks you are a hypochondriac--he just needs to say he'll do follow up treatment if needed.

I had a very difficult time getting the doctor's letter. She was the nastiest woman you could ever imagine! But she wrote me one and now I am sending it.

The main thing is that the NIH get bombarded with so many applications regarding this condition that they can't ignore it. We already sent them our stories via email. Colleen at the NIH said that this really piqued the doctors' interest because of all the similarities of onset and symptoms within our stories.

Please let me know if you need more info about it. This is an amazing opportunity that apparently only 10 of us on the group realize.

So many times I hear "I would do anything to find answers and relief from this horrible condition" but then when an opportunity arises, no one shows up.

There is also another doctor at the House Ear Institute in CA who is very interested in studying it. He even talked with Dr. about it. But we need to apply for a grant for about $2 million. I really want to start the grant application process, but then think that even if we get it, will anyone take the effort to be studied??

We have 800+ people on this site. I know that many are in the UK and abroad. But if there was any chance of research I would hope that most would do anything to step up and do it!! Airline tickets are expensive, but don't you think it is worth it--a cure????

Just frustrated...

Let me know if you need more info or anything. It's all in past postings.

Thanks,

Kathy Howe

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of foodrageSent: Sunday, October 12, 2008 5:17 PMTo: Soundsensitivity Subject: Working together to get recognition of this disorder

Hi Jerry,I have suffered from an irrational anger response to the sound ofpeople eating, chewing gum, tapping pencils etc. for about 25 years. Ionly recently (about a week ago) discovered that I am not alone inthis disorder and that, in fact, it is a true disorder (not just mebeing crazy).I love the idea of pursuing research into this condition and suspectthat many people in this group would be willing to participiate. Ihave a strong background in research though my current work is in thearea of bone biology, so is not particularly well suited toresearching our disorder. But I'm certainly willing to talk more aboutthis with anyone interested in putting the time and energy in topursue it.As you point out, one of our top priorities should also be to get ourcondition recognized by the medical establishment. Who knows how manymore people there are out there who suffer from this condition alonebecause health care providers do not realize this is an actual entity.An established diagnosis would also help for insurance coverage forpotential treatments as well as for communication with bosses/coworkers.I am willing to work with you (or other sufferers) to look into howthis might be accomplished. I am not sure where to start but perhapswe could contact the AMA, NIH, APA to find out how a new diseasebecomes accepted as an entity? Nan

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[Guest guest]

Thanks for trying . You should tell whatever doctor that you see that you need the letter by such and such date and to please have their office call you when it is done. That is what I did, and she begrudgingly wrote it.

Tell him that he just needs to say he will treat you for follow up. Tell him he can write that he thinks your symptoms are bogus! The NIH seems to love to prove these doctors wrong--they have seen many strange conditions that are true conditions, but the doctors who referred them thought the people were crazy.

Please don't give up!

Kathy

Working together to get recognition of this> disorder> > > Hi Jerry,> > I have suffered from an irrational anger response to the sound of> people eating, chewing gum, tapping pencils etc. for about 25 years. I> only recently (about a week ago) discovered that I am not alone in> this disorder and that, in fact, it is a true disorder (not just me> being crazy).> > I love the idea of pursuing research into this condition and suspect> that many people in this group would be willing to participiate. I> have a strong background in research though my current work is in the> area of bone biology, so is not particularly well suited to> researching our disorder. But I'm certainly willing to talk more about> this with anyone interested in putting the time and energy in to> pursue it.> > As you point out, one of our top priorities should also be to get our> condition recognized by the medical establishment. Who knows how many> more people there are out there who suffer from this condition alone> because health care providers do not realize this is an actual entity.> An established diagnosis would also help for insurance coverage for> potential treatments as well as for communication with bosses/coworkers.> > I am willing to work with you (or other sufferers) to look into how> this might be accomplished. I am not sure where to start but perhaps> we could contact the AMA, NIH, APA to find out how a new disease> becomes accepted as an entity?> > Nan>

[Guest guest]

I think part of the problem is fear, Kathy: Fear that no one will listen, that research won't change anything, fear of more dead ends and lowered hopes.

I know I'm having a lot of trouble with fear lately.

= M-F.

[Guest guest]

I have trouble with my doctor thinking it's actually sounds causing

my anxiety and irritibility. He thinks it's just that... anxiety. I

have a follow up visit next month after being on xanax for 3 months.

He thinks that will have solved all my problems. SURPRISE... it

didn't. Perhaps if he were actually right and I did just have

anxiety it would have, but I know better. So, over the last 3 months

I've been keeping a journal recording when I get anxious, irritated,

angry etc. and make a note as to why. Every single time it's because

I heard something except for once which was going to the dentist,

which makes me anxious. If he has half a brain he'll do something

different to help me with this, and help me apply to the NIH. If

not, I'm going somewhere else. I would suggest you tell your doctor

about your new found discovery (this site and it's contents) and see

what happens. It's a start. Maybe you'll get lucky and have a non-

dork of a doctor! LOL

>

> What can I do? I've never told a medical practitioner about this

problem, except in terms of my anxiety and being easily irritated. I

myself (a highly educated and well-read individual who is excessively

proactive in self-care) had never heard of this disorder prior to

last Sat.

>

> I would love to get this problem recognized and researched. Gwin

>

[Guest guest]

I would imagine it could only help hearing from people outside of the

country. Then they will KNOW how widespread a problem this is. You

may not get in the program youself being out of the country but it may

help others get in. What do you think Kathy?

[Guest guest]

I know what you mean. I've had that same fear--that we would finally get research and they wouldn't find anything tangible (not that it isn't there, but that they don't have the tests to find it--or they do the wrong tests). But I feel that God is in the driver's seat and I need to have faith that He will give them the knowledge they need to find the answers.

Through Him all things are possible!

That's what gets me through. It's in His hands.

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of Multi-Facets Wolfu-chanSent: Tuesday, October 14, 2008 7:07 PMTo: Soundsensitivity Subject: Re: Working together to get recognition of this disorder

I think part of the problem is fear, Kathy: Fear that no one will listen, that research won't change anything, fear of more dead ends and lowered hopes.

I know I'm having a lot of trouble with fear lately.

= M-F.

[Guest guest]

Gwin,

I think a letter about yourself without a supporting referral is still

worthwhile.

In my letter I make the point that I don't like to discuss this even

with health professionals as my experience tells me there is no point.

So I think they will see that may of us have either given up or just

not found any professional assistance worth pursuing.

I think this is a rare opportunity. Even if you don't want to do it

for yourself, do it to support the 800 people here. We need as much

help as we can get.

Thanks

Ingrid.

>

> What can I do? I've never told a medical practitioner about this

problem, except in terms of my anxiety and being easily irritated. I

myself (a highly educated and well-read individual who is excessively

proactive in self-care) had never heard of this disorder prior to last

Sat.

>

> I would love to get this problem recognized and researched. Gwin

>

>

> Working together to get recognition

of this disorder

>

>

> Hi Jerry,

>

> I have suffered from an irrational anger response to the sound of

> people eating, chewing gum, tapping pencils etc. for about 25

years. I

> only recently (about a week ago) discovered that I am not alone in

> this disorder and that, in fact, it is a true disorder (not just me

> being crazy).

>

> I love the idea of pursuing research into this condition and suspect

> that many people in this group would be willing to participiate. I

> have a strong background in research though my current work is

in the

> area of bone biology, so is not particularly well suited to

> researching our disorder. But I'm certainly willing to talk more

about

> this with anyone interested in putting the time and energy in to

> pursue it.

>

> As you point out, one of our top priorities should also be to

get our

> condition recognized by the medical establishment. Who knows how

many

> more people there are out there who suffer from this condition alone

> because health care providers do not realize this is an actual

entity.

> An established diagnosis would also help for insurance coverage for

> potential treatments as well as for communication with

bosses/coworkers.

>

> I am willing to work with you (or other sufferers) to look into how

> this might be accomplished. I am not sure where to start but perhaps

> we could contact the AMA, NIH, APA to find out how a new disease

> becomes accepted as an entity?

>

> Nan

>