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Hi Tommi. Thanks, I know I should push harder. I don't know what I'm

afraid of. I'm not trying to make friends. Kennedy is scheduled for a

MRI on July 1st. I want them to get her in sooner because I'm afraid

they will want to operate and mess up school for Kennedy. I know her

health comes first but school is pretty important also. Kennedy will be

starting a new school next year (we are buying a new house) and that it

traumatizing in itself, missing the first days/weeks of school would be

awful!

, mom to Kennedy(6 shunt, cathed, meds, walker)

Karrigan(3 1/2) and Nolan(21 months)

The sun shines the same on all children.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

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Hi Tommi. Thanks, I know I should push harder. I don't know what I'm

afraid of. I'm not trying to make friends. Kennedy is scheduled for a

MRI on July 1st. I want them to get her in sooner because I'm afraid

they will want to operate and mess up school for Kennedy. I know her

health comes first but school is pretty important also. Kennedy will be

starting a new school next year (we are buying a new house) and that it

traumatizing in itself, missing the first days/weeks of school would be

awful!

, mom to Kennedy(6 shunt, cathed, meds, walker)

Karrigan(3 1/2) and Nolan(21 months)

The sun shines the same on all children.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

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Guest guest

Hi Tommi. Thanks, I know I should push harder. I don't know what I'm

afraid of. I'm not trying to make friends. Kennedy is scheduled for a

MRI on July 1st. I want them to get her in sooner because I'm afraid

they will want to operate and mess up school for Kennedy. I know her

health comes first but school is pretty important also. Kennedy will be

starting a new school next year (we are buying a new house) and that it

traumatizing in itself, missing the first days/weeks of school would be

awful!

, mom to Kennedy(6 shunt, cathed, meds, walker)

Karrigan(3 1/2) and Nolan(21 months)

The sun shines the same on all children.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

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Guest guest

,

Welcome you have come to the right place. I have SB and TC myself I have just

had my fourth detethering about 9 weeks ago. My parents found out at age 6 and I

am now 40 and mother of 4 children my self. You are a mom and I am going to tell

you to use those instincts. You know your child better than anyone and if

something is off you fight like heck to get it right. If you read some of the

stories from the group you will find that SB and TC is a constant fight when it

comes to the children and even us adults have to fight to get things done. You

are Kennedy's voice right now so don't take no crap if you have to take her else

where than that is what you have to do. I wish these doctors were more aware of

the havoc this creates when they put us off. I got lucky this time after a 2

year run around I finally found a doctor that would listen when I told them that

things weren't right. By the time I got to the nsg he didn't have a lot of hope

that surgery was going to fix much. Thank God it worked out much better than

either of us expected and surgery did reverse most of my symptoms. Stick to your

gut feeling and things will get done. Can you get her MRI moved to sooner?

Sometimes you can call and get put on a cancellation list where they call you if

they have something sooner. This also works for doctors offices. Good luck.

Chris

hi

Hello. My name is . I am the mother to Kennedy, a beautiful 6

year old little girl with Spina Bifida. She is showing symptoms of TC (I

think). I am having a hard time getting the doctor to take me seriously

since she is not having every symptom. I am very worried. I would like

to hear about others who have been where I am and also help with when and

when NOT to put my foot down and demand attention.

, mom to Kennedy(6 shunt, cathed, meds, walker)

Karrigan(3 1/2) and Nolan(21 months)

The sun shines the same on all children.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

Link to comment
Share on other sites

Guest guest

,

Welcome you have come to the right place. I have SB and TC myself I have just

had my fourth detethering about 9 weeks ago. My parents found out at age 6 and I

am now 40 and mother of 4 children my self. You are a mom and I am going to tell

you to use those instincts. You know your child better than anyone and if

something is off you fight like heck to get it right. If you read some of the

stories from the group you will find that SB and TC is a constant fight when it

comes to the children and even us adults have to fight to get things done. You

are Kennedy's voice right now so don't take no crap if you have to take her else

where than that is what you have to do. I wish these doctors were more aware of

the havoc this creates when they put us off. I got lucky this time after a 2

year run around I finally found a doctor that would listen when I told them that

things weren't right. By the time I got to the nsg he didn't have a lot of hope

that surgery was going to fix much. Thank God it worked out much better than

either of us expected and surgery did reverse most of my symptoms. Stick to your

gut feeling and things will get done. Can you get her MRI moved to sooner?

Sometimes you can call and get put on a cancellation list where they call you if

they have something sooner. This also works for doctors offices. Good luck.

Chris

hi

Hello. My name is . I am the mother to Kennedy, a beautiful 6

year old little girl with Spina Bifida. She is showing symptoms of TC (I

think). I am having a hard time getting the doctor to take me seriously

since she is not having every symptom. I am very worried. I would like

to hear about others who have been where I am and also help with when and

when NOT to put my foot down and demand attention.

, mom to Kennedy(6 shunt, cathed, meds, walker)

Karrigan(3 1/2) and Nolan(21 months)

The sun shines the same on all children.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

Link to comment
Share on other sites

Guest guest

,

Welcome you have come to the right place. I have SB and TC myself I have just

had my fourth detethering about 9 weeks ago. My parents found out at age 6 and I

am now 40 and mother of 4 children my self. You are a mom and I am going to tell

you to use those instincts. You know your child better than anyone and if

something is off you fight like heck to get it right. If you read some of the

stories from the group you will find that SB and TC is a constant fight when it

comes to the children and even us adults have to fight to get things done. You

are Kennedy's voice right now so don't take no crap if you have to take her else

where than that is what you have to do. I wish these doctors were more aware of

the havoc this creates when they put us off. I got lucky this time after a 2

year run around I finally found a doctor that would listen when I told them that

things weren't right. By the time I got to the nsg he didn't have a lot of hope

that surgery was going to fix much. Thank God it worked out much better than

either of us expected and surgery did reverse most of my symptoms. Stick to your

gut feeling and things will get done. Can you get her MRI moved to sooner?

Sometimes you can call and get put on a cancellation list where they call you if

they have something sooner. This also works for doctors offices. Good luck.

Chris

hi

Hello. My name is . I am the mother to Kennedy, a beautiful 6

year old little girl with Spina Bifida. She is showing symptoms of TC (I

think). I am having a hard time getting the doctor to take me seriously

since she is not having every symptom. I am very worried. I would like

to hear about others who have been where I am and also help with when and

when NOT to put my foot down and demand attention.

, mom to Kennedy(6 shunt, cathed, meds, walker)

Karrigan(3 1/2) and Nolan(21 months)

The sun shines the same on all children.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

Link to comment
Share on other sites

Guest guest

Don't back down Tommi. Make sure she gets what she needs. I am a mother of a SB

child myself. I am also a nurse. I have learned that the noisest wheel gets the

grease. Also, be aware, parents of disabled children are usually very

knowledgeable about their children's condition and are their staunchest

advocated. The MD's need to recognize this and respect them and their knowledge.

Most of the docs I have dealt with don't really understand.

Re: hi

Hi Tommi. Thanks, I know I should push harder. I don't know what I'm

afraid of. I'm not trying to make friends. Kennedy is scheduled for a

MRI on July 1st. I want them to get her in sooner because I'm afraid

they will want to operate and mess up school for Kennedy. I know her

health comes first but school is pretty important also. Kennedy will be

starting a new school next year (we are buying a new house) and that it

traumatizing in itself, missing the first days/weeks of school would be

awful!

, mom to Kennedy(6 shunt, cathed, meds, walker)

Karrigan(3 1/2) and Nolan(21 months)

The sun shines the same on all children.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

Link to comment
Share on other sites

Guest guest

Don't back down Tommi. Make sure she gets what she needs. I am a mother of a SB

child myself. I am also a nurse. I have learned that the noisest wheel gets the

grease. Also, be aware, parents of disabled children are usually very

knowledgeable about their children's condition and are their staunchest

advocated. The MD's need to recognize this and respect them and their knowledge.

Most of the docs I have dealt with don't really understand.

Re: hi

Hi Tommi. Thanks, I know I should push harder. I don't know what I'm

afraid of. I'm not trying to make friends. Kennedy is scheduled for a

MRI on July 1st. I want them to get her in sooner because I'm afraid

they will want to operate and mess up school for Kennedy. I know her

health comes first but school is pretty important also. Kennedy will be

starting a new school next year (we are buying a new house) and that it

traumatizing in itself, missing the first days/weeks of school would be

awful!

, mom to Kennedy(6 shunt, cathed, meds, walker)

Karrigan(3 1/2) and Nolan(21 months)

The sun shines the same on all children.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

Link to comment
Share on other sites

Guest guest

Don't back down Tommi. Make sure she gets what she needs. I am a mother of a SB

child myself. I am also a nurse. I have learned that the noisest wheel gets the

grease. Also, be aware, parents of disabled children are usually very

knowledgeable about their children's condition and are their staunchest

advocated. The MD's need to recognize this and respect them and their knowledge.

Most of the docs I have dealt with don't really understand.

Re: hi

Hi Tommi. Thanks, I know I should push harder. I don't know what I'm

afraid of. I'm not trying to make friends. Kennedy is scheduled for a

MRI on July 1st. I want them to get her in sooner because I'm afraid

they will want to operate and mess up school for Kennedy. I know her

health comes first but school is pretty important also. Kennedy will be

starting a new school next year (we are buying a new house) and that it

traumatizing in itself, missing the first days/weeks of school would be

awful!

, mom to Kennedy(6 shunt, cathed, meds, walker)

Karrigan(3 1/2) and Nolan(21 months)

The sun shines the same on all children.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

Link to comment
Share on other sites

Guest guest

, change doctors now. I don't know where you live but I have found that

places like Childrens Hospital, Orthopaedic Hosp etc have better knowledge.

Regular doctors just don't have the resources to handle these special children.

Go right away to your Regional Center and ask for a recommendation. Also, don't

forget, those doctors work for you.

hi

Hello. My name is . I am the mother to Kennedy, a beautiful 6

year old little girl with Spina Bifida. She is showing symptoms of TC (I

think). I am having a hard time getting the doctor to take me seriously

since she is not having every symptom. I am very worried. I would like

to hear about others who have been where I am and also help with when and

when NOT to put my foot down and demand attention.

, mom to Kennedy(6 shunt, cathed, meds, walker)

Karrigan(3 1/2) and Nolan(21 months)

The sun shines the same on all children.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

Link to comment
Share on other sites

Guest guest

, change doctors now. I don't know where you live but I have found that

places like Childrens Hospital, Orthopaedic Hosp etc have better knowledge.

Regular doctors just don't have the resources to handle these special children.

Go right away to your Regional Center and ask for a recommendation. Also, don't

forget, those doctors work for you.

hi

Hello. My name is . I am the mother to Kennedy, a beautiful 6

year old little girl with Spina Bifida. She is showing symptoms of TC (I

think). I am having a hard time getting the doctor to take me seriously

since she is not having every symptom. I am very worried. I would like

to hear about others who have been where I am and also help with when and

when NOT to put my foot down and demand attention.

, mom to Kennedy(6 shunt, cathed, meds, walker)

Karrigan(3 1/2) and Nolan(21 months)

The sun shines the same on all children.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

Link to comment
Share on other sites

Guest guest

, I agree with Chris. Fight till the bloody end for your child. You will

win in the long run. Don't ever give up. The docs don't really understand what

it is like to have a child like this so it is up to us to teach them. I was

really lucky with the ortho guy when my son needed bone work. He also had a

child with SB.

hi

Hello. My name is . I am the mother to Kennedy, a beautiful 6

year old little girl with Spina Bifida. She is showing symptoms of TC (I

think). I am having a hard time getting the doctor to take me seriously

since she is not having every symptom. I am very worried. I would like

to hear about others who have been where I am and also help with when and

when NOT to put my foot down and demand attention.

, mom to Kennedy(6 shunt, cathed, meds, walker)

Karrigan(3 1/2) and Nolan(21 months)

The sun shines the same on all children.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

Link to comment
Share on other sites

Guest guest

, I agree with Chris. Fight till the bloody end for your child. You will

win in the long run. Don't ever give up. The docs don't really understand what

it is like to have a child like this so it is up to us to teach them. I was

really lucky with the ortho guy when my son needed bone work. He also had a

child with SB.

hi

Hello. My name is . I am the mother to Kennedy, a beautiful 6

year old little girl with Spina Bifida. She is showing symptoms of TC (I

think). I am having a hard time getting the doctor to take me seriously

since she is not having every symptom. I am very worried. I would like

to hear about others who have been where I am and also help with when and

when NOT to put my foot down and demand attention.

, mom to Kennedy(6 shunt, cathed, meds, walker)

Karrigan(3 1/2) and Nolan(21 months)

The sun shines the same on all children.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

Link to comment
Share on other sites

  • 7 years later...

Hola , bienvenida al grupo. Hablo español si quiere enviarme un correo.

cate_labish@...

No sé si hay alguien más aquí de españa. Yo estoy en México. La mayoría de

nosostro no hemos encontrado un médico que comprende este síndrome,

desgraciadamente.

Saludos,

Cate

>

>

> Hello,

> My name is and I have 44 years. 4S I know that I have but I've never been

diagnosed. In Spain I have not found any information. Someone could recommend a

good doctor?

> Sorry, but no English. I used a translator.

>

>

>

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Hola , bienvenida al grupo. Hablo español si quiere enviarme un correo.

cate_labish@...

No sé si hay alguien más aquí de españa. Yo estoy en México. La mayoría de

nosostro no hemos encontrado un médico que comprende este síndrome,

desgraciadamente.

Saludos,

Cate

>

>

> Hello,

> My name is and I have 44 years. 4S I know that I have but I've never been

diagnosed. In Spain I have not found any information. Someone could recommend a

good doctor?

> Sorry, but no English. I used a translator.

>

>

>

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Share on other sites

Hola , bienvenida al grupo. Hablo español si quiere enviarme un correo.

cate_labish@...

No sé si hay alguien más aquí de españa. Yo estoy en México. La mayoría de

nosostro no hemos encontrado un médico que comprende este síndrome,

desgraciadamente.

Saludos,

Cate

>

>

> Hello,

> My name is and I have 44 years. 4S I know that I have but I've never been

diagnosed. In Spain I have not found any information. Someone could recommend a

good doctor?

> Sorry, but no English. I used a translator.

>

>

>

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Share on other sites

  • 3 months later...

Hello and welcome. I have to be quick and just wanted to say we know just what you are going through. As you read through the posts here ( and soon) the information in the other forum you will find a lot of tricks but a small bit of advice is whatch the way you think. For me thinking negatively or harshly about a person their action or sound soon leads to a new trigger which reinforces the negative thoughts, its a hard spiral to get out of.When you hear a sound or see a sight that is "almost a trigger" try and put a positive spin on it, for example if the sound of silverware on plates is irratating you but not yet 4s try and say something like " they are scraping because they liked the meal I cooked so much they want to show me their appreciation by finishing every last bit". I have found using thought processes such as this I can avoid turning something into a new trigger and it lessens the feeling of a current one ( depending on the severity)I try and step back and look at a big picture and try and find the positive because I find a lot of my triggers are about small things I can't help but focus on ( smacking lips, sniffing, gulping so on and so forth) but trying to look @ it from a positive view point forces me to see the big picture and avoid getting "stuck" on the small details. It doesn't always work though but worth a try.All the best and good luck with your study RichSent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Wed, 22 Dec 2010 13:35:52 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Hi I am new to the group (just joined today), and I believe I have been suffering from 4S for about 21 years (since I was 9 years old). I know that at that age, flipping through book pages really bothered me, and since then I have problems with that and with gum chewing, GUM POPPING (i HATE that and can hear it a mile away!), people breathing hard, pens clicking, and people eating, etc. I am also really bothered by people putting their legs on my chair in school, so I sit in the back of the classroom to avoid this, and the noises I hear. It seems that, aside from gum popping, if I can see the noise that is bothering me, I am better off. With gum popping, I just simply hate it and can't stand it. It seems so rude to me, and, from what I've heard, mostly teenagers do it. I have visions of going up to the person and taking the gum out of their mouth and saying something like " SHUT UP " or something with more profane language. Of course, I don't do that. I find myself getting very anxious when I hear these things. I also struggle with anxiety (though that seems to be getting better) and I also have Bipolar Disorder. I also have OCD without overt behaviors (self-diagnosed) because I am always counting!! I count EVERYTHING, even the features on my partner's face. Is there anything that can help?? I am in school right now, and although I can handle that, I am scared that I may have problems once I start working full-time. I am in school to become a Medical Assistant, and will be working in a doctor's office. Perhaps ear plugs would work for me to distort the sound. I need to be able to hear people talking to me, but not gum popping or magazine pages rustling. PLEASE HELP!! thank you so much.

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Hello and welcome. I have to be quick and just wanted to say we know just what you are going through. As you read through the posts here ( and soon) the information in the other forum you will find a lot of tricks but a small bit of advice is whatch the way you think. For me thinking negatively or harshly about a person their action or sound soon leads to a new trigger which reinforces the negative thoughts, its a hard spiral to get out of.When you hear a sound or see a sight that is "almost a trigger" try and put a positive spin on it, for example if the sound of silverware on plates is irratating you but not yet 4s try and say something like " they are scraping because they liked the meal I cooked so much they want to show me their appreciation by finishing every last bit". I have found using thought processes such as this I can avoid turning something into a new trigger and it lessens the feeling of a current one ( depending on the severity)I try and step back and look at a big picture and try and find the positive because I find a lot of my triggers are about small things I can't help but focus on ( smacking lips, sniffing, gulping so on and so forth) but trying to look @ it from a positive view point forces me to see the big picture and avoid getting "stuck" on the small details. It doesn't always work though but worth a try.All the best and good luck with your study RichSent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Wed, 22 Dec 2010 13:35:52 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Hi I am new to the group (just joined today), and I believe I have been suffering from 4S for about 21 years (since I was 9 years old). I know that at that age, flipping through book pages really bothered me, and since then I have problems with that and with gum chewing, GUM POPPING (i HATE that and can hear it a mile away!), people breathing hard, pens clicking, and people eating, etc. I am also really bothered by people putting their legs on my chair in school, so I sit in the back of the classroom to avoid this, and the noises I hear. It seems that, aside from gum popping, if I can see the noise that is bothering me, I am better off. With gum popping, I just simply hate it and can't stand it. It seems so rude to me, and, from what I've heard, mostly teenagers do it. I have visions of going up to the person and taking the gum out of their mouth and saying something like " SHUT UP " or something with more profane language. Of course, I don't do that. I find myself getting very anxious when I hear these things. I also struggle with anxiety (though that seems to be getting better) and I also have Bipolar Disorder. I also have OCD without overt behaviors (self-diagnosed) because I am always counting!! I count EVERYTHING, even the features on my partner's face. Is there anything that can help?? I am in school right now, and although I can handle that, I am scared that I may have problems once I start working full-time. I am in school to become a Medical Assistant, and will be working in a doctor's office. Perhaps ear plugs would work for me to distort the sound. I need to be able to hear people talking to me, but not gum popping or magazine pages rustling. PLEASE HELP!! thank you so much.

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Hello and welcome. I have to be quick and just wanted to say we know just what you are going through. As you read through the posts here ( and soon) the information in the other forum you will find a lot of tricks but a small bit of advice is whatch the way you think. For me thinking negatively or harshly about a person their action or sound soon leads to a new trigger which reinforces the negative thoughts, its a hard spiral to get out of.When you hear a sound or see a sight that is "almost a trigger" try and put a positive spin on it, for example if the sound of silverware on plates is irratating you but not yet 4s try and say something like " they are scraping because they liked the meal I cooked so much they want to show me their appreciation by finishing every last bit". I have found using thought processes such as this I can avoid turning something into a new trigger and it lessens the feeling of a current one ( depending on the severity)I try and step back and look at a big picture and try and find the positive because I find a lot of my triggers are about small things I can't help but focus on ( smacking lips, sniffing, gulping so on and so forth) but trying to look @ it from a positive view point forces me to see the big picture and avoid getting "stuck" on the small details. It doesn't always work though but worth a try.All the best and good luck with your study RichSent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Wed, 22 Dec 2010 13:35:52 -0000To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Hi I am new to the group (just joined today), and I believe I have been suffering from 4S for about 21 years (since I was 9 years old). I know that at that age, flipping through book pages really bothered me, and since then I have problems with that and with gum chewing, GUM POPPING (i HATE that and can hear it a mile away!), people breathing hard, pens clicking, and people eating, etc. I am also really bothered by people putting their legs on my chair in school, so I sit in the back of the classroom to avoid this, and the noises I hear. It seems that, aside from gum popping, if I can see the noise that is bothering me, I am better off. With gum popping, I just simply hate it and can't stand it. It seems so rude to me, and, from what I've heard, mostly teenagers do it. I have visions of going up to the person and taking the gum out of their mouth and saying something like " SHUT UP " or something with more profane language. Of course, I don't do that. I find myself getting very anxious when I hear these things. I also struggle with anxiety (though that seems to be getting better) and I also have Bipolar Disorder. I also have OCD without overt behaviors (self-diagnosed) because I am always counting!! I count EVERYTHING, even the features on my partner's face. Is there anything that can help?? I am in school right now, and although I can handle that, I am scared that I may have problems once I start working full-time. I am in school to become a Medical Assistant, and will be working in a doctor's office. Perhaps ear plugs would work for me to distort the sound. I need to be able to hear people talking to me, but not gum popping or magazine pages rustling. PLEASE HELP!! thank you so much.

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  • 1 year later...

New to this group. I'm Steve from Connecticut. I'm looking for a proficient

Chronic Fatigue Specialist in my state, MA or NY. Does anyone know of such a

doctor?

Sent from my iPhone

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