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Re: FW: FW: NF2 r's

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I agree with you on the ironic part!! :>)

Carol

Fusca wrote:

> Hi Carol,

>

> The doctors are no more a work of God than the frog! The ironic part is that

some doctors think they ARE God.

>

>

>

> ----------

> From: carol winarski

> Sent: Thursday, October 12, 2000 5:08 PM

> To: NF2_Crewegroups

> Subject: Re: FW: NF2 r's

>

> Ahhhhhhh....but aren't the doctors a work of God?? some just don't use their

brain?? or commom sense?? They discarded it somewhere???

>

> Carol

>

> Fusca wrote:

>

> > Dear Bro,

> >

> > When you look at this dog-eat-dog world, we are a civilized bunch here in

Canada. You can blame docs for some things but you can only take it so far.

Remember these are the guys and gals that can rip open you head and usually put

it back together again. There may be a few missing parts but where would we be

without them?

> >

> > I re-call once in grade school a teacher dissected a frog and was showing

the class the various parts. The heart was still beating and he said the frog

was feeling no pain. Being a catholic school, he said the frog's internal

function were a work of God. Being a kid who loved to take things apart (but not

always able to put them back together in the correct sequence), I marveled as to

how the teacher would put the frog back together again. I was very distressed to

find out the frog would be discarded. So... when you consider doctors can look

at you brain and then patch you back up again it really is something.

> >

> > Like any group, there are a few bad apples. Obviously, the Lisch Nodules

group need to find another profession. On the whole, doctors are OK but, unlike

the frog, they are not a work of God.

> >

> > Good to see the sun is back down there.

> >

> >

> > ----------

> > From: Cross

> > Sent: Monday, October 09, 2000 5:18 PM

> > To: NF2_Crewegroups

> > Subject: Re: NF2 r's

> >

> > Hey Bro,

> > I think you can blame the doc as they can be a pain in the butt with their

> > pious attitude to us little vegemites --- all because we don't have a med

> > qualifications. " we know best' attitude really gets up my nose. So I dump on

> > them when I can --- There is a teaching Med Hospital out here tell NF

> > patiens that they have NF2 because they have Lisch Nodules Ha Ha did I have

> > some fun with that.

> > But you are right in what you say in your post. It's just that you are very

> > polite like another guy on the crew I know.........

> > Bro . getting warmer 28c

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I agree with you on the ironic part!! :>)

Carol

Fusca wrote:

> Hi Carol,

>

> The doctors are no more a work of God than the frog! The ironic part is that

some doctors think they ARE God.

>

>

>

> ----------

> From: carol winarski

> Sent: Thursday, October 12, 2000 5:08 PM

> To: NF2_Crewegroups

> Subject: Re: FW: NF2 r's

>

> Ahhhhhhh....but aren't the doctors a work of God?? some just don't use their

brain?? or commom sense?? They discarded it somewhere???

>

> Carol

>

> Fusca wrote:

>

> > Dear Bro,

> >

> > When you look at this dog-eat-dog world, we are a civilized bunch here in

Canada. You can blame docs for some things but you can only take it so far.

Remember these are the guys and gals that can rip open you head and usually put

it back together again. There may be a few missing parts but where would we be

without them?

> >

> > I re-call once in grade school a teacher dissected a frog and was showing

the class the various parts. The heart was still beating and he said the frog

was feeling no pain. Being a catholic school, he said the frog's internal

function were a work of God. Being a kid who loved to take things apart (but not

always able to put them back together in the correct sequence), I marveled as to

how the teacher would put the frog back together again. I was very distressed to

find out the frog would be discarded. So... when you consider doctors can look

at you brain and then patch you back up again it really is something.

> >

> > Like any group, there are a few bad apples. Obviously, the Lisch Nodules

group need to find another profession. On the whole, doctors are OK but, unlike

the frog, they are not a work of God.

> >

> > Good to see the sun is back down there.

> >

> >

> > ----------

> > From: Cross

> > Sent: Monday, October 09, 2000 5:18 PM

> > To: NF2_Crewegroups

> > Subject: Re: NF2 r's

> >

> > Hey Bro,

> > I think you can blame the doc as they can be a pain in the butt with their

> > pious attitude to us little vegemites --- all because we don't have a med

> > qualifications. " we know best' attitude really gets up my nose. So I dump on

> > them when I can --- There is a teaching Med Hospital out here tell NF

> > patiens that they have NF2 because they have Lisch Nodules Ha Ha did I have

> > some fun with that.

> > But you are right in what you say in your post. It's just that you are very

> > polite like another guy on the crew I know.........

> > Bro . getting warmer 28c

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I agree with you on the ironic part!! :>)

Carol

Fusca wrote:

> Hi Carol,

>

> The doctors are no more a work of God than the frog! The ironic part is that

some doctors think they ARE God.

>

>

>

> ----------

> From: carol winarski

> Sent: Thursday, October 12, 2000 5:08 PM

> To: NF2_Crewegroups

> Subject: Re: FW: NF2 r's

>

> Ahhhhhhh....but aren't the doctors a work of God?? some just don't use their

brain?? or commom sense?? They discarded it somewhere???

>

> Carol

>

> Fusca wrote:

>

> > Dear Bro,

> >

> > When you look at this dog-eat-dog world, we are a civilized bunch here in

Canada. You can blame docs for some things but you can only take it so far.

Remember these are the guys and gals that can rip open you head and usually put

it back together again. There may be a few missing parts but where would we be

without them?

> >

> > I re-call once in grade school a teacher dissected a frog and was showing

the class the various parts. The heart was still beating and he said the frog

was feeling no pain. Being a catholic school, he said the frog's internal

function were a work of God. Being a kid who loved to take things apart (but not

always able to put them back together in the correct sequence), I marveled as to

how the teacher would put the frog back together again. I was very distressed to

find out the frog would be discarded. So... when you consider doctors can look

at you brain and then patch you back up again it really is something.

> >

> > Like any group, there are a few bad apples. Obviously, the Lisch Nodules

group need to find another profession. On the whole, doctors are OK but, unlike

the frog, they are not a work of God.

> >

> > Good to see the sun is back down there.

> >

> >

> > ----------

> > From: Cross

> > Sent: Monday, October 09, 2000 5:18 PM

> > To: NF2_Crewegroups

> > Subject: Re: NF2 r's

> >

> > Hey Bro,

> > I think you can blame the doc as they can be a pain in the butt with their

> > pious attitude to us little vegemites --- all because we don't have a med

> > qualifications. " we know best' attitude really gets up my nose. So I dump on

> > them when I can --- There is a teaching Med Hospital out here tell NF

> > patiens that they have NF2 because they have Lisch Nodules Ha Ha did I have

> > some fun with that.

> > But you are right in what you say in your post. It's just that you are very

> > polite like another guy on the crew I know.........

> > Bro . getting warmer 28c

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But unless they are sleeping under a rock, ive never known anyone to have it

thatttttt mild. deafness at minimum and thats bad enough.

Fusca wrote:

> ,

>

> I doubt anyone knows this with absolute certainly. I guess you can say I love

to disagree (what a miserable old sod!). :)

>

> I would be willing to bet that some people have NF2 but it is so " mild " that

they never develop any problems. I guess in a way you could say these people are

" carriers " . Perhaps this is one of the things that makes NF2 so hard to

understand.

>

>

>

> ----------

> From: Henrion

> Sent: Monday, October 09, 2000 10:28 PM

> To: NF2_Crewegroups

> Subject: Re: FW: NF2 r's

>

> you got it mark. there are no carriers, you have it or you dont.

>

> Mark Sarmac wrote:

>

> > , , et al.,

> >

> > I thought I understood that NF2 was an " autosomol " genetic disorder of

> > Chromosome-22, therefore, there are no " carriers " but our genes just

> > " mutate " , meaning there is no one to point fingers too, saying, " you had

> > given me this disease. "

> >

> > Genetically speaking, NF2 is a crap shoot isn't it?

> >

> > Mark

> >

> > ----Original Message Follows----

> >

> > Reply-To: NF2_Crewegroups

> > To: " '_NF2_Crewonelist' " <NF2_Crewegroups>

> > Subject: FW: NF2 r's

> > Date: Mon, 9 Oct 2000 13:46:33 -0400

> >

> > Hi Ron,

> >

> > I have never heard of this 'carrier' business. But this sounds like an

> > example of the doctors not fully understanding NF2. I am not trying to put

> > blame on them because NF2 is a very complex disorder and one that seems to

> > vary in so many ways. In any case, the way you discribe 'carrier', it would

> > seem this can be the case for other disoders but who knows about NF2??

> >

> >

> >

> > ----------

> > From: Ron Underwood

> > Sent: Sunday, October 08, 2000 1:44 AM

> > To: NF2_Crewegroups

> > Subject: NF2 r's

> >

> > >

> >

> > Does anyone know anything about " r's " ? I inherited NF2 from my

> > father but I'm told my mother is also a carrier, she cannot pass the NF

> > gene but if she marries and NF2 person then the disease is much more

> > powerful. I have never really understood this and wonder what exactly she

> > carries also I wonder if anyone has ever tried or succeeded in tracing the

> > gene back to some sort of beginning. Our family goes back about 6

> > generations to a a case of incest and I know it's hard to go any further

> > but it would be interesting to know if this carrier thing might produce a

> > full course if it were allowed to be mixed, ie, incest, or 2 carriers

> > marring. Even though my mother " s hasn't the gene, her brother got it,

> > weird stuff this, eh>

> > Ron

> >

> > _________________________________________________________________________

> > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

> >

> > Share information about yourself, create your own public profile at

> > http://profiles.msn.com.

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But unless they are sleeping under a rock, ive never known anyone to have it

thatttttt mild. deafness at minimum and thats bad enough.

Fusca wrote:

> ,

>

> I doubt anyone knows this with absolute certainly. I guess you can say I love

to disagree (what a miserable old sod!). :)

>

> I would be willing to bet that some people have NF2 but it is so " mild " that

they never develop any problems. I guess in a way you could say these people are

" carriers " . Perhaps this is one of the things that makes NF2 so hard to

understand.

>

>

>

> ----------

> From: Henrion

> Sent: Monday, October 09, 2000 10:28 PM

> To: NF2_Crewegroups

> Subject: Re: FW: NF2 r's

>

> you got it mark. there are no carriers, you have it or you dont.

>

> Mark Sarmac wrote:

>

> > , , et al.,

> >

> > I thought I understood that NF2 was an " autosomol " genetic disorder of

> > Chromosome-22, therefore, there are no " carriers " but our genes just

> > " mutate " , meaning there is no one to point fingers too, saying, " you had

> > given me this disease. "

> >

> > Genetically speaking, NF2 is a crap shoot isn't it?

> >

> > Mark

> >

> > ----Original Message Follows----

> >

> > Reply-To: NF2_Crewegroups

> > To: " '_NF2_Crewonelist' " <NF2_Crewegroups>

> > Subject: FW: NF2 r's

> > Date: Mon, 9 Oct 2000 13:46:33 -0400

> >

> > Hi Ron,

> >

> > I have never heard of this 'carrier' business. But this sounds like an

> > example of the doctors not fully understanding NF2. I am not trying to put

> > blame on them because NF2 is a very complex disorder and one that seems to

> > vary in so many ways. In any case, the way you discribe 'carrier', it would

> > seem this can be the case for other disoders but who knows about NF2??

> >

> >

> >

> > ----------

> > From: Ron Underwood

> > Sent: Sunday, October 08, 2000 1:44 AM

> > To: NF2_Crewegroups

> > Subject: NF2 r's

> >

> > >

> >

> > Does anyone know anything about " r's " ? I inherited NF2 from my

> > father but I'm told my mother is also a carrier, she cannot pass the NF

> > gene but if she marries and NF2 person then the disease is much more

> > powerful. I have never really understood this and wonder what exactly she

> > carries also I wonder if anyone has ever tried or succeeded in tracing the

> > gene back to some sort of beginning. Our family goes back about 6

> > generations to a a case of incest and I know it's hard to go any further

> > but it would be interesting to know if this carrier thing might produce a

> > full course if it were allowed to be mixed, ie, incest, or 2 carriers

> > marring. Even though my mother " s hasn't the gene, her brother got it,

> > weird stuff this, eh>

> > Ron

> >

> > _________________________________________________________________________

> > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

> >

> > Share information about yourself, create your own public profile at

> > http://profiles.msn.com.

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Share on other sites

Thank you Carol!!! You maked me feel better!! :) -Lori

Re: FW: NF2 r's Yikes that's what I meant too , sorry!!. I NEED TO SPEAK. A resent example is my neurologist Dr Lafrance in Corvallis Oregon, I asked 4 times for a referral to a neurosurgeon in Portland and he refused, because, like God he knows what is best for me. He and Dale discussed my last surgery with me in the room and deaf without giving me any notes. I am STILL scared. Anyways HE chose a surgeon in Corvallis and I am still here. I just last week called LaFrance to referr me to Portland once again but, still have not had word back from him. He is neither my God or my benefactor, I truly think that a person needs to be in partnership with their Dr., you need to have some power.. Well I do anyways. -Lori

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