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Jane Norma and I got off and went to msn cause it was too little and slow.

Joya

At 07:10 PM 10/07/2001 -0500, you wrote:

>I'm there. Anyone else?

>Jane

>aka dzenim

> Re: Question

>

>

> > Hey anyone want to try chatting on AC

> > http://groups.yahoo.com/group/AtkinsChallengers/chat

> >

> >

> > Please visit our homepage at http://members.xoom.com/AChallengers

> > You will find information, recipes, before and after pictures.

> >

> > To contact any of the the list moderators, you can email them at:

> >

> > (jocee131@...)

> > Kari (kari@...)

> > Norma (norwood@...)

> > JJ (cybercat1@...)

> > Dianne (lambert1@...)

> >

> > Visit our 2000 Train Tour Site -

>http://www.brunnet.net/k & l/web_site_train_tour/actraintour.htm

> >

> >

> >

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Jane Norma and I got off and went to msn cause it was too little and slow.

Joya

At 07:10 PM 10/07/2001 -0500, you wrote:

>I'm there. Anyone else?

>Jane

>aka dzenim

> Re: Question

>

>

> > Hey anyone want to try chatting on AC

> > http://groups.yahoo.com/group/AtkinsChallengers/chat

> >

> >

> > Please visit our homepage at http://members.xoom.com/AChallengers

> > You will find information, recipes, before and after pictures.

> >

> > To contact any of the the list moderators, you can email them at:

> >

> > (jocee131@...)

> > Kari (kari@...)

> > Norma (norwood@...)

> > JJ (cybercat1@...)

> > Dianne (lambert1@...)

> >

> > Visit our 2000 Train Tour Site -

>http://www.brunnet.net/k & l/web_site_train_tour/actraintour.htm

> >

> >

> >

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I know this to be true, as this is what Joya did when the hurricane was

threatening them.

Re: Question

> Eat cookies.

> No Name

>

> At 08:16 PM 10/07/2001 -0300, you wrote:

>

> >Diane Bauer who sends out recipes every month would like to ask you

> >this question. If you care to answer I will forward it to her.

> >Norma

> > " What have you/could you/would you/will you do as a low carber

> >to prepare yourself for any possible emergency situation? "

> >

> >

> >Please visit our homepage at http://members.xoom.com/AChallengers

> >You will find information, recipes, before and after pictures.

> >

> >To contact any of the the list moderators, you can email them at:

> >

> > (jocee131@...)

> >Kari (kari@...)

> >Norma (norwood@...)

> >JJ (cybercat1@...)

> >Dianne (lambert1@...)

> >

> >Visit our 2000 Train Tour Site -

> >http://www.brunnet.net/k & l/web_site_train_tour/actraintour.htm

> >

> >

> >

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I'm there. Anyone else?

Jane

aka dzenim

Re: Question

> Hey anyone want to try chatting on AC

> http://groups.yahoo.com/group/AtkinsChallengers/chat

>

>

> Please visit our homepage at http://members.xoom.com/AChallengers

> You will find information, recipes, before and after pictures.

>

> To contact any of the the list moderators, you can email them at:

>

> (jocee131@...)

> Kari (kari@...)

> Norma (norwood@...)

> JJ (cybercat1@...)

> Dianne (lambert1@...)

>

> Visit our 2000 Train Tour Site -

http://www.brunnet.net/k & l/web_site_train_tour/actraintour.htm

>

>

>

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I'm there. Anyone else?

Jane

aka dzenim

Re: Question

> Hey anyone want to try chatting on AC

> http://groups.yahoo.com/group/AtkinsChallengers/chat

>

>

> Please visit our homepage at http://members.xoom.com/AChallengers

> You will find information, recipes, before and after pictures.

>

> To contact any of the the list moderators, you can email them at:

>

> (jocee131@...)

> Kari (kari@...)

> Norma (norwood@...)

> JJ (cybercat1@...)

> Dianne (lambert1@...)

>

> Visit our 2000 Train Tour Site -

http://www.brunnet.net/k & l/web_site_train_tour/actraintour.htm

>

>

>

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I'm there. Anyone else?

Jane

aka dzenim

Re: Question

> Hey anyone want to try chatting on AC

> http://groups.yahoo.com/group/AtkinsChallengers/chat

>

>

> Please visit our homepage at http://members.xoom.com/AChallengers

> You will find information, recipes, before and after pictures.

>

> To contact any of the the list moderators, you can email them at:

>

> (jocee131@...)

> Kari (kari@...)

> Norma (norwood@...)

> JJ (cybercat1@...)

> Dianne (lambert1@...)

>

> Visit our 2000 Train Tour Site -

http://www.brunnet.net/k & l/web_site_train_tour/actraintour.htm

>

>

>

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  • 8 months later...
Guest guest

Rich Kolesar wrote:

Hi!

I have a question? My 16 year old daughter le (decompression 1998) started

having mild symptoms not long ago, after 3 plus years symptom free. She had an

MRI and because her regular NS is on vacation a Dr., that I never heard of,

called to say that she agrees with the radiologist findings that there is no

compression and she has no idea why le would be experiencing symptoms.

le insists that she feels just like she did before her surgery and I

believe her. My question is if nothing shows on the MRI can this still be chiari

related? Or do we need to start looking for other causes? Her symptoms are neck

and head pain, occasional double vision, lack of gag reflex and coughing spells

that end in shortness of breath. (Her regular NS will call us at the end of the

month and I want to be well informed when I talk to him.) Thanks for any help!

(Her MRI was of the brain, our insurance company denied the second MRI of the C-

Spine)

Shirley

Hi Shirley,

I had 4 NSG's tell me my MRI's looked fine.For 18 months I looked for

answers.I finally went to the chiari clinic in NY.My brain had slumped into a

too large opening and I had psuedotumor.

I don't know why we have to fight for answers but sometimes we do.I will keep

your family in my prayers!

Gentle hugs,

Lee

" Make yourself a blessing to someone.Your kind smile or pat on the back might

pull someone back from the edge. "

Carmellia Elliot

http://www.restministries.org

chronicpaindevotionals

---------------------------------

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  • 2 months later...

Hi,

Second opinions are always a good idea, although I have also found out on a

personal basis that they can become quite confusing, especially when both

are from " experts " , but their diagnosis and remedies don't quite jive.

This is a decision you must make on your own, but if finances permit,

seeing both experts wouldn't be a bad idea. You can then decide who you are

most comfortable with, and where you feel you would receive the best treatment.

Good luck. Keep us posted.

Wishing you Rainbows,

Grammy

<A HREF= " http://www.wishesandrainbows.org " >wishes and rainbows</A>

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Hi,

Second opinions are always a good idea, although I have also found out on a

personal basis that they can become quite confusing, especially when both

are from " experts " , but their diagnosis and remedies don't quite jive.

This is a decision you must make on your own, but if finances permit,

seeing both experts wouldn't be a bad idea. You can then decide who you are

most comfortable with, and where you feel you would receive the best treatment.

Good luck. Keep us posted.

Wishing you Rainbows,

Grammy

<A HREF= " http://www.wishesandrainbows.org " >wishes and rainbows</A>

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  • 1 month later...

Hi Randy. Those are some great questions. I found out when I was 25 that I have NF2. I started losing the hearing in my right ear in my teens but I blamed that on going to Ozzy concerts. I have 3 or 4 little raised spots on my legs but my doctor said they were fat packs and that we would just watch them. They never grew. As far as learning in school goes, I was in Montessori schools until 2nd grade, a "magnet" school for 2nd grade. I had always wanted to go to college and become a vet. I was going to go to be an Aggie (Texas College) like the rest of my cousins. When I moved to Ohio, I got in with the wrong crowd and messed up my own future. When I was a kid my nickname was klutz. If there was a glass of milk or juice around I would knock it over. I also had a bad habit of running into other kids and bumping foreheads. That was the most painful thing back then. I must have done that at least 10 times. When I took my 5 year old to her first day of Kindergarten, I told her teacher that I have NF2 and that there are learinging disabilities linked to the disease but that I didn't have any problems learning. She was so sweet. She took my hand and shook it and said that she would keep an eye out for any problems. I guess she shocked me because in the back of my head, I had this idea that she would just be standoff-ish. You know how someone says they have AIDS and people tend to back up or wipe off there hands and use hand santizer? That is how I imagined her teacher acting. But instead she was just really great and seemed genuinely concerned. Anyway, I have rambled enough. I hope everybody has a great night and a better tomorrow!!

:-)

-Billie

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Hi Randy. Those are some great questions. I found out when I was 25 that I have NF2. I started losing the hearing in my right ear in my teens but I blamed that on going to Ozzy concerts. I have 3 or 4 little raised spots on my legs but my doctor said they were fat packs and that we would just watch them. They never grew. As far as learning in school goes, I was in Montessori schools until 2nd grade, a "magnet" school for 2nd grade. I had always wanted to go to college and become a vet. I was going to go to be an Aggie (Texas College) like the rest of my cousins. When I moved to Ohio, I got in with the wrong crowd and messed up my own future. When I was a kid my nickname was klutz. If there was a glass of milk or juice around I would knock it over. I also had a bad habit of running into other kids and bumping foreheads. That was the most painful thing back then. I must have done that at least 10 times. When I took my 5 year old to her first day of Kindergarten, I told her teacher that I have NF2 and that there are learinging disabilities linked to the disease but that I didn't have any problems learning. She was so sweet. She took my hand and shook it and said that she would keep an eye out for any problems. I guess she shocked me because in the back of my head, I had this idea that she would just be standoff-ish. You know how someone says they have AIDS and people tend to back up or wipe off there hands and use hand santizer? That is how I imagined her teacher acting. But instead she was just really great and seemed genuinely concerned. Anyway, I have rambled enough. I hope everybody has a great night and a better tomorrow!!

:-)

-Billie

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Hi Randy. Those are some great questions. I found out when I was 25 that I have NF2. I started losing the hearing in my right ear in my teens but I blamed that on going to Ozzy concerts. I have 3 or 4 little raised spots on my legs but my doctor said they were fat packs and that we would just watch them. They never grew. As far as learning in school goes, I was in Montessori schools until 2nd grade, a "magnet" school for 2nd grade. I had always wanted to go to college and become a vet. I was going to go to be an Aggie (Texas College) like the rest of my cousins. When I moved to Ohio, I got in with the wrong crowd and messed up my own future. When I was a kid my nickname was klutz. If there was a glass of milk or juice around I would knock it over. I also had a bad habit of running into other kids and bumping foreheads. That was the most painful thing back then. I must have done that at least 10 times. When I took my 5 year old to her first day of Kindergarten, I told her teacher that I have NF2 and that there are learinging disabilities linked to the disease but that I didn't have any problems learning. She was so sweet. She took my hand and shook it and said that she would keep an eye out for any problems. I guess she shocked me because in the back of my head, I had this idea that she would just be standoff-ish. You know how someone says they have AIDS and people tend to back up or wipe off there hands and use hand santizer? That is how I imagined her teacher acting. But instead she was just really great and seemed genuinely concerned. Anyway, I have rambled enough. I hope everybody has a great night and a better tomorrow!!

:-)

-Billie

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I have some questions that are puzzling me and would like some answers

People have NF from birth. It is chromosone related so it is there from

birth

I, on the crew list, see so many young people who NF has affected.

I know I have NF.

It did not affect me until I was in my late thirties.

It does not affect my hearing; nor did it affect my schooling. I was above

average in school and had no learning problems.

Why is NF not consistent?

Should I not have been affected from birth?

I was a clumsy kid, had cafe de lait spots, but relatively not out of the

ordinary

Had a problem with one eye not being able to centre but never contributed to

NF.

Could I have schwannomatosis and it not show up for so many years?

I did not start have problems till after surgery for some else.

Does NF wait dormant in some people for some years and in others strikes out

quickly?

I have numerous tumours and I am totally disabled

I just want to know can NF sit dormant in some people for years before

rearing its ugly head?

Randy

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I have some questions that are puzzling me and would like some answers

People have NF from birth. It is chromosone related so it is there from

birth

I, on the crew list, see so many young people who NF has affected.

I know I have NF.

It did not affect me until I was in my late thirties.

It does not affect my hearing; nor did it affect my schooling. I was above

average in school and had no learning problems.

Why is NF not consistent?

Should I not have been affected from birth?

I was a clumsy kid, had cafe de lait spots, but relatively not out of the

ordinary

Had a problem with one eye not being able to centre but never contributed to

NF.

Could I have schwannomatosis and it not show up for so many years?

I did not start have problems till after surgery for some else.

Does NF wait dormant in some people for some years and in others strikes out

quickly?

I have numerous tumours and I am totally disabled

I just want to know can NF sit dormant in some people for years before

rearing its ugly head?

Randy

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I have some questions that are puzzling me and would like some answers

People have NF from birth. It is chromosone related so it is there from

birth

I, on the crew list, see so many young people who NF has affected.

I know I have NF.

It did not affect me until I was in my late thirties.

It does not affect my hearing; nor did it affect my schooling. I was above

average in school and had no learning problems.

Why is NF not consistent?

Should I not have been affected from birth?

I was a clumsy kid, had cafe de lait spots, but relatively not out of the

ordinary

Had a problem with one eye not being able to centre but never contributed to

NF.

Could I have schwannomatosis and it not show up for so many years?

I did not start have problems till after surgery for some else.

Does NF wait dormant in some people for some years and in others strikes out

quickly?

I have numerous tumours and I am totally disabled

I just want to know can NF sit dormant in some people for years before

rearing its ugly head?

Randy

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Randy

I wasn't diagnosed until I was 54yrs. Mind you I had years of neck

problems. The tumours were growing, but slowly, and hadn't reached a stage

of causing problems until then.

The dangerous one was removed, which caused it own set of problems and for

whatever reasons, the others are now causing pain and problems.

I know, until you know they are there, you put the pain down the other

things.

I had reached the stage, that after 9 holes of golf, I would have to take

pain meds to enable me to finish the round. Then gradually the golf had to

stop and I put it down to various things, too old, too tired, overworked

etc. etc. But now know there is a cluster of tumours that were causing that

pain.

Maybe, ignorance is bliss.

ine

Re: Question

> I just want to know can NF sit dormant in some people for years before

> rearing its ugly head?

> Randy

>

>

>

>

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Randy

I wasn't diagnosed until I was 54yrs. Mind you I had years of neck

problems. The tumours were growing, but slowly, and hadn't reached a stage

of causing problems until then.

The dangerous one was removed, which caused it own set of problems and for

whatever reasons, the others are now causing pain and problems.

I know, until you know they are there, you put the pain down the other

things.

I had reached the stage, that after 9 holes of golf, I would have to take

pain meds to enable me to finish the round. Then gradually the golf had to

stop and I put it down to various things, too old, too tired, overworked

etc. etc. But now know there is a cluster of tumours that were causing that

pain.

Maybe, ignorance is bliss.

ine

Re: Question

> I just want to know can NF sit dormant in some people for years before

> rearing its ugly head?

> Randy

>

>

>

>

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I am thinking that our hormones....(puberty)...have some to do with some of

us. My NF2 didn't do anything until I was 24 when my hearing loss started.

That was 1 1/2 after my daughter was born. 3 years after my son. So I am

wondering if that started the ball rolling. 6 years later, the AN was

removed and it was large enough that if it wasn't removed that within 2

months of finding it, I would be gone.

I don't think there is any answer as each of us is individual with our

genes, hormones etc. Just like other diseases affect different people in

different ways so does this disease of ours.

Carol

Re: Question

> Why is NF not consistent?

> Should I not have been affected from birth?

> I was a clumsy kid, had cafe de lait spots, but relatively not out of the

> ordinary

> Had a problem with one eye not being able to centre but never contributed

to

> NF.

> Could I have schwannomatosis and it not show up for so many years?

> I did not start have problems till after surgery for some else.

> Does NF wait dormant in some people for some years and in others strikes

out

> quickly?

> I have numerous tumours and I am totally disabled

> I just want to know can NF sit dormant in some people for years before

> rearing its ugly head?

> Randy

>

>

>

>

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I am thinking that our hormones....(puberty)...have some to do with some of

us. My NF2 didn't do anything until I was 24 when my hearing loss started.

That was 1 1/2 after my daughter was born. 3 years after my son. So I am

wondering if that started the ball rolling. 6 years later, the AN was

removed and it was large enough that if it wasn't removed that within 2

months of finding it, I would be gone.

I don't think there is any answer as each of us is individual with our

genes, hormones etc. Just like other diseases affect different people in

different ways so does this disease of ours.

Carol

Re: Question

> Why is NF not consistent?

> Should I not have been affected from birth?

> I was a clumsy kid, had cafe de lait spots, but relatively not out of the

> ordinary

> Had a problem with one eye not being able to centre but never contributed

to

> NF.

> Could I have schwannomatosis and it not show up for so many years?

> I did not start have problems till after surgery for some else.

> Does NF wait dormant in some people for some years and in others strikes

out

> quickly?

> I have numerous tumours and I am totally disabled

> I just want to know can NF sit dormant in some people for years before

> rearing its ugly head?

> Randy

>

>

>

>

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I am thinking that our hormones....(puberty)...have some to do with some of

us. My NF2 didn't do anything until I was 24 when my hearing loss started.

That was 1 1/2 after my daughter was born. 3 years after my son. So I am

wondering if that started the ball rolling. 6 years later, the AN was

removed and it was large enough that if it wasn't removed that within 2

months of finding it, I would be gone.

I don't think there is any answer as each of us is individual with our

genes, hormones etc. Just like other diseases affect different people in

different ways so does this disease of ours.

Carol

Re: Question

> Why is NF not consistent?

> Should I not have been affected from birth?

> I was a clumsy kid, had cafe de lait spots, but relatively not out of the

> ordinary

> Had a problem with one eye not being able to centre but never contributed

to

> NF.

> Could I have schwannomatosis and it not show up for so many years?

> I did not start have problems till after surgery for some else.

> Does NF wait dormant in some people for some years and in others strikes

out

> quickly?

> I have numerous tumours and I am totally disabled

> I just want to know can NF sit dormant in some people for years before

> rearing its ugly head?

> Randy

>

>

>

>

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Share on other sites

I think Carol is right that hormones can play a part.

We've known I had NF since I was very young but the major tumors in the

Head And Spine didn't start to appear till my late teens. But OTOH my mother

didn't have her NF2 " become active " until her Mid Thirties (she'd also had 4

kids by this time) so I think it does vary by the person but I won't rule

out hormones having an affect.

Pete

Re: Re: Question

I am thinking that our hormones....(puberty)...have some to do with some of

us. My NF2 didn't do anything until I was 24 when my hearing loss started.

That was 1 1/2 after my daughter was born. 3 years after my son. So I am

wondering if that started the ball rolling. 6 years later, the AN was

removed and it was large enough that if it wasn't removed that within 2

months of finding it, I would be gone.

I don't think there is any answer as each of us is individual with our

genes, hormones etc. Just like other diseases affect different people in

different ways so does this disease of ours.

Carol

Re: Question

> Why is NF not consistent?

> Should I not have been affected from birth?

> I was a clumsy kid, had cafe de lait spots, but relatively not out of the

> ordinary

> Had a problem with one eye not being able to centre but never contributed

to

> NF.

> Could I have schwannomatosis and it not show up for so many years?

> I did not start have problems till after surgery for some else.

> Does NF wait dormant in some people for some years and in others strikes

out

> quickly?

> I have numerous tumours and I am totally disabled

> I just want to know can NF sit dormant in some people for years before

> rearing its ugly head?

> Randy

>

>

>

>

Link to comment
Share on other sites

I think Carol is right that hormones can play a part.

We've known I had NF since I was very young but the major tumors in the

Head And Spine didn't start to appear till my late teens. But OTOH my mother

didn't have her NF2 " become active " until her Mid Thirties (she'd also had 4

kids by this time) so I think it does vary by the person but I won't rule

out hormones having an affect.

Pete

Re: Re: Question

I am thinking that our hormones....(puberty)...have some to do with some of

us. My NF2 didn't do anything until I was 24 when my hearing loss started.

That was 1 1/2 after my daughter was born. 3 years after my son. So I am

wondering if that started the ball rolling. 6 years later, the AN was

removed and it was large enough that if it wasn't removed that within 2

months of finding it, I would be gone.

I don't think there is any answer as each of us is individual with our

genes, hormones etc. Just like other diseases affect different people in

different ways so does this disease of ours.

Carol

Re: Question

> Why is NF not consistent?

> Should I not have been affected from birth?

> I was a clumsy kid, had cafe de lait spots, but relatively not out of the

> ordinary

> Had a problem with one eye not being able to centre but never contributed

to

> NF.

> Could I have schwannomatosis and it not show up for so many years?

> I did not start have problems till after surgery for some else.

> Does NF wait dormant in some people for some years and in others strikes

out

> quickly?

> I have numerous tumours and I am totally disabled

> I just want to know can NF sit dormant in some people for years before

> rearing its ugly head?

> Randy

>

>

>

>

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