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Boy i sure do:( all the time and its sharp and shooting but it doesnt last long. I have no idea how to stop it~~Lowi

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Hi De any one who ever can answer Mike wants to know if there is ever pain in your ears but not like an ear ache but shooting pains ??/ Lois

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No it doesn't SKIP and you have a 50/50 chance of passing it on. Hence my 3 kids BOY with NF Girl without Boy with. AMAZING

M

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be "Gene-free"?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam ajmurdey@...www.chariot.net.au/~ajmurdey

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I AGREE MARCUS I HAVE 3 DAUGHTERS

FIRST DOESN'T HAVE IT

SECOND DOES AND HER 2 KIDS DO

THIRD DOESN'T HAVE IT

FOURTH HAS IT SO FAR HER KIDS SHOW NO SIGNS ON TEST

FIFTH HAS IT SO FAR HER FIRST A BOY DOES THEN 2 GIRLS AGES 5 AND 3 SO FAR NO SIGNS

CATHERINE

-----Original Message-----From: Marcus Sent: Tuesday, January 15, 2002 5:58 AMTo: NF2_Crew Subject: Re: QUESTION

No it doesn't SKIP and you have a 50/50 chance of passing it on. Hence my 3 kids BOY with NF Girl without Boy with. AMAZING

M

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be " Gene-free " ?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam ajmurdey@...www.chariot.net.au/~ajmurdey

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MARIE AND I HAVE BEEN TOLD BY OUR DOCTOR AT HEI THAT IS DOES NOT SKIP GENERATIONS IF A PERSON HAS IT THEIR OFFSPRING HAS A 50 50 CHANCE OF INHERITING IT IF THEY DO NOT HAVE IT THEN IT DOES NOT PASS ON

CATHERINE

-----Original Message-----From: Adam Murdey Sent: Saturday, January 12, 2002 10:07 PMTo: NF2_Crew Subject: QUESTIONImportance: High

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be " Gene-free " ?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam ajmurdey@...www.chariot.net.au/~ajmurdey

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Adam, Your sister has to have the gene to pass it on. If she does not have it the kids won't have it.

Mikey A

QUESTION

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be "Gene-free"?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam ajmurdey@...www.chariot.net.au/~ajmurdey

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Not to my understanding Adam. NF2 is never recessive:( So she will have it or not, one or the other. She cant be a carrier. There are no silent carriers:( Ill cross my fingers that she doesn't have it!! The kids will be NF free that way too:) Ive been hearing about a mosaic?? but that is not NF2, easier to build NF2 from that point, but its not yet. Hope she's not that either~~Luck from Or, Lowi

QUESTION

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be "Gene-free"?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam ajmurdey@...www.chariot.net.au/~ajmurdey

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Agreeing with Mikey!

Carol

Mike wrote:

Adam, Your sister has to have the gene to pass it on. If she does not have it the kids won't have it.

Mikey A

QUESTION

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be "Gene-free"?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam

ajmurdey@...

www.chariot.net.au/~ajmurdey

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THAT IS WHAT I HAVE BEEN TOLD AS WELL, CATHERINE, BY MY DOCTORS. IF MY DAUGHTER DOES NOT HAVE NF2 HER CHILDREN ARE FREE FROM IT AND SO ON AND SO FORTH.

JANE

RE: QUESTION

MARIE AND I HAVE BEEN TOLD BY OUR DOCTOR AT HEI THAT IS DOES NOT SKIP GENERATIONS IF A PERSON HAS IT THEIR OFFSPRING HAS A 50 50 CHANCE OF INHERITING IT IF THEY DO NOT HAVE IT THEN IT DOES NOT PASS ON

CATHERINE

-----Original Message-----From: Adam Murdey Sent: Saturday, January 12, 2002 10:07 PMTo: NF2_Crew Subject: QUESTIONImportance: High

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be " Gene-free " ?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam ajmurdey@...www.chariot.net.au/~ajmurdey

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Adam ,

I'm not sure about the skipping generations but it seems in my husbands family it did ... Lois

QUESTION

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be "Gene-free"?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam ajmurdey@...www.chariot.net.au/~ajmurdey

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In a message dated 1/15/02 3:45:25 PM Pacific Standard Time,

jeffwurst@... writes:

<< Subject: QUESTION

Importance: High

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She

has two kids and I need to know that if my sister doesn't have the gene,

will her kids be " Gene-free " ?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam

ajmurdey@...

www.chariot.net.au/~ajmurdey >>

I have 3 kids and one has been tested so far. She does not have it. From what

I understand there is a 50/50 chance that each of my kids could have NF2. I

am not quite sure about it skipping generations. In my family my Mom has it,

her sister, my cousin, and me. My cousin and I are both first born. My other

two sisters do not have it and my cousins brother does not have it either.

Lori Jo

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Adam

Sand her kids should be tested.

Jeffro!

-----Original Message-----From: Adam Murdey Sent: Saturday, January 12, 2002 10:07 PMTo: NF2_Crew Subject: QUESTIONImportance: High

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be "Gene-free"?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam ajmurdey@...www.chariot.net.au/~ajmurdey

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nf2 is autosomal dominate or you have a 50-50 chance of giving it to your kids IF you have it.

Joanie

QUESTION

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be "Gene-free"?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam ajmurdey@...www.chariot.net.au/~ajmurdey

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I have a question regarding the DNA testing. Is that just blood work

that they can do? I would rather go that route than have an MRI.

Adam Murdey wrote:

Greetings boys and girls, My

older sister is having DNA testing to see if she has the NF2 gene.

She has two kids and I need to know that if my sister doesn't have the

gene, will her kids be "Gene-free"? I am not sure if NF2 is able to

skip a generation or not. Any reply would be appreciated.Adam

ajmurdey@...

www.chariot.net.au/~ajmurdey

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Why do you say a mosaic is NOT NF2? Marie

Re: QUESTION

Not to my understanding Adam. NF2 is never recessive:( So she will have it or not, one or the other. She cant be a carrier. There are no silent carriers:( Ill cross my fingers that she doesn't have it!! The kids will be NF free that way too:) Ive been hearing about a mosaic?? but that is not NF2, easier to build NF2 from that point, but its not yet. Hope she's not that either~~Luck from Or, Lowi

QUESTION

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be "Gene-free"?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam ajmurdey@...www.chariot.net.au/~ajmurdey

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Because its not NF:) Close but no cigar:) NF2 is a misread of Gene 22?? Mosaic is screwy but not full blown NF. I think actually G'ma and Mom are mosaic. They both have had fibrous breast tumors removed:( My sisters seem ok, they have not been tested, me on other hand:) Im so lucky:) hahahaha Anyways i first heard of mosaic from you marie!!:)

QUESTION

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be "Gene-free"?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam ajmurdey@...www.chariot.net.au/~ajmurdey

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Hi all,

Pardon my complete ignorance of the term "mosaic". What's that / what are symptoms?

I am the only one in my family known to have NF2, but my mom has always had some problems like Migraine headaches, bouts of depression, and fibrous breast tumors that doctors told her to 'live with".

Matt

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Hi all, Pardon my complete ignorance of the term "mosaic". What's that / what are symptoms?

********************************************************************************

(Below is a message I sent to the CREW last year in response to a similar question)

In 1996, my case was reviewed by Dr. Dilys Parry of the National Institutes

of Health. In a letter to me, she discussed "mosaic" NF-2:

" ... the term "mosaic" means a mixture of two types of

cells. In the few people who have been shown to be mosaic

for NF-2, probably 10% or so of their cells have one mutated

NF-2 gene and one normal NF-2 gene, while the rest of the

cells carry two normal copies of this gene. Mosaicism

results when an NF-2 mutation occurs early in embryonic

development, rather than being inherited through an egg or

sperm from a parent."

In a later conversation with Dr. Parry, she told me the chances that someone

with mosaic NF-2 would pass the disease on to an offspring were less than the

usual 50 percent probability. That's because not all cells of a mosaic

NF-2er have the defective gene. The luck of the draw could include the sperm

or egg cell.

Steve Cherrington

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Hi Crew

I received my NF2 from my mother, she is 86 now and has never developed any tumours. The Docs explained that she was a NF2 mosaic. She passed it onto me and I passed it onto both my sons. We all have had blood tests done in the UK who confirmed this.

So mum only passed it onto me, although I have one sister who died at age 34, some 24 yrs ago before MRI's and therefore not tested. My other living sister is clear. But I have only two boys and they both have confirmed NF2. We had thought mine has come from Dad who also died 24 yrs ago, but after Mum's blood results that idea was quashed.

Just some extra info.

ine

Re: QUESTION

Hi all, Pardon my complete ignorance of the term "mosaic". What's that / what are symptoms?********************************************************************************(Below is a message I sent to the CREW last year in response to a similar question)In 1996, my case was reviewed by Dr. Dilys Parry of the National Institutes of Health. In a letter to me, she discussed "mosaic" NF-2:" ... the term "mosaic" means a mixture of two types ofcells. In the few people who have been shown to be mosaicfor NF-2, probably 10% or so of their cells have one mutatedNF-2 gene and one normal NF-2 gene, while the rest of thecells carry two normal copies of this gene. Mosaicismresults when an NF-2 mutation occurs early in embryonicdevelopment, rather than being inherited through an egg orsperm from a parent."In a later conversation with Dr. Parry, she told me the chances that someone with mosaic NF-2 would pass the disease on to an offspring were less than the usual 50 percent probability. That's because not all cells of a mosaic NF-2er have the defective gene. The luck of the draw could include the sperm or egg cell.Steve Cherrington

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Thanks Steve and ine:) You guys explained perfect!!~~Lowi who feels off the hook now:)

Re: QUESTION

Hi all, Pardon my complete ignorance of the term "mosaic". What's that / what are symptoms?********************************************************************************(Below is a message I sent to the CREW last year in response to a similar question)In 1996, my case was reviewed by Dr. Dilys Parry of the National Institutes of Health. In a letter to me, she discussed "mosaic" NF-2:" ... the term "mosaic" means a mixture of two types ofcells. In the few people who have been shown to be mosaicfor NF-2, probably 10% or so of their cells have one mutatedNF-2 gene and one normal NF-2 gene, while the rest of thecells carry two normal copies of this gene. Mosaicismresults when an NF-2 mutation occurs early in embryonicdevelopment, rather than being inherited through an egg orsperm from a parent."In a later conversation with Dr. Parry, she told me the chances that someone with mosaic NF-2 would pass the disease on to an offspring were less than the usual 50 percent probability. That's because not all cells of a mosaic NF-2er have the defective gene. The luck of the draw could include the sperm or egg cell.Steve Cherrington

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Adam

From everything written so far, NF2 can't miss a generation then reappear. Thank goodness. My sister DNA was clear. Because I have it and also my two sons her doctors in the UK advised that she have MRI's. She did but again nothing.

ine

Re: QUESTION

I have a question regarding the DNA testing. Is that just blood work that they can do? I would rather go that route than have an MRI. Adam Murdey wrote:

Greetings boys and girls, My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be "Gene-free"? I am not sure if NF2 is able to skip a generation or not. Any reply would be appreciated.Adam ajmurdey@... www.chariot.net.au/~ajmurdey

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Hi all,

Mosaic in NF2 is usually when a person is diagnosed when they are older (over 40) and with very few Schwann cell tumours. My case is considered mosaic by Dr Gareth Evens and Dr Mia MacCollin because I was diagnosed at the age of 56. The first VS showed its self when I was 49 - op the following year - told that was it - BS - as the second one showed its self 6 years later and had that one fried with FSR. (Both were considered small - 1.8 cm - the one that was fried has shrunk to 1 cm and I still have around 50% hearing in that ear.)

To date no other schwannomas - this is why I am considered mosaic. People can still be mosaic with one or two other schwannomas, as long as diagnosed later in life...

...

PS on another note - If you find reading email print to small - go to return to sender and click - when the window comes up - go to edit - then to select all - click - go to font size and enlarge to whatever size you want and it will change the font size for you. When you have finished reading click the close button (top right) it will then come up if you wish to save or not - press NO...

QUESTION

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be "Gene-free"?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam ajmurdey@...www.chariot.net.au/~ajmurdey

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I thought sure Mia MacCollin said mosaic is definitely NF2, it just is not in every gene or cell or whatever (biology is not my strong point) in the body. Marie

Re: QUESTION

Because its not NF:) Close but no cigar:) NF2 is a misread of Gene 22?? Mosaic is screwy but not full blown NF. I think actually G'ma and Mom are mosaic. They both have had fibrous breast tumors removed:( My sisters seem ok, they have not been tested, me on other hand:) Im so lucky:) hahahaha Anyways i first heard of mosaic from you marie!!:)

QUESTION

Greetings boys and girls,

My older sister is having DNA testing to see if she has the NF2 gene. She has two kids and I need to know that if my sister doesn't have the gene, will her kids be "Gene-free"?

I am not sure if NF2 is able to skip a generation or not.

Any reply would be appreciated.

Adam ajmurdey@...www.chariot.net.au/~ajmurdey

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Mosaic is usually a "milder" form of NF, often only bi-lateral ANs; The mutation that occurs at birth that causes NF2 is not present in EVERY cell(?), but rather in SOME of them. That is a very UNofficial explanation. Marie

Re: QUESTIONHi all, Pardon my complete ignorance of the term "mosaic". What's that / what are symptoms? I am the only one in my family known to have NF2, but my mom has always had some problems like Migraine headaches, bouts of depression, and fibrous breast tumors that doctors told her to 'live with".Matt

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If I wasn't a lady...I would tell you what I thought about those

doctors. I hope she got help Matt.

Carol

borrrris@... wrote:

I am the only one in my family known to have NF2, but my mom has always had

some problems like Migraine headaches, bouts of depression, and fibrous breast

tumors that doctors told her to 'live with".

Matt

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If I wasn't a lady...I would tell you what I thought about those

doctors. I hope she got help Matt.

Carol

borrrris@... wrote:

I am the only one in my family known to have NF2, but my mom has always had

some problems like Migraine headaches, bouts of depression, and fibrous breast

tumors that doctors told her to 'live with".

Matt

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