Re: Gentic Counseling

[Guest guest]

Hi Nisha,

I met with a genetics counselor a few years ago and had a tube of blood drawn

for a genetic test to see if my children had NF2.They said they could tell by

my blood if the kids have it.They went into my DNA and couldn't find the NF2

gene.To me that was good news..the best I have ever heard.I have NF2 but

don't have the gene.I have a girlfriend that is a doctor and says this is

totally possible and thats most likely what happend.I went deaf in one ear at

age 15,my son is now 15 and I am such a worry wart.But what are you to do.We

know the horrors that go along with this disease and do NOT want our babies

to have it.I wasnt diagnosed with it untill I was in my 30's.

Lana in Minnesota

[Guest guest]

I would disagree; check with Dr. Mia MacCollin. Marie

Gentic Counseling

Hi Nisha:

Your question was:

I was curious if anyone has been to or knows about Genetic Counseling?

I had consulted with a Medical Genetics Doctor, Dr. McLeod earlier

this month. Now I'm not sure where you are from, but I'm from British

Columbia, Canada. What he told me is that currently there is no genetic testing

available for NF2 except on a research basis. There is research being done on

this at the Montreal Neurological Research Institute here in Canada There may be

something of that sort being done where you are from. Dr. McLeod did say he was

going to write to his colleagues to see if I could be included in the research

study.

Joyce

[Guest guest]

Hi,

Late into this topic, but my best friend is a genetic counsler.

Joanie

[Guest guest]

Lana,

I beg to differ: If you don't have the NF2 gene, you don't have NF2. This

is because NF2 is a genetic disease. I am, however, wondering more and more

these days if it is possible for a person to develop BAN (bilateral acoustic

neuroma) without having NF2. When doctors see BAN they automatically

diagnose NF2, it is the only diagnosis they can make based on diagnostic

criteria. I am unclear of something. How could they tell if your children

had NF2 by analysing your blood?

> I met with a genetics counselor a few years ago and had a tube of blood

drawn

> for a genetic test to see if my children had NF2.They said they could tell

by

> my blood if the kids have it.They went into my DNA and couldn't find the

NF2

> gene.To me that was good news..the best I have ever heard.I have NF2 but

> don't have the gene.I have a girlfriend that is a doctor and says this is

> totally possible and thats most likely what happend.

[Guest guest]

Hi ,

The genetics councilor said that they couldn't find the NF2 gene and I know

NF2 is a genetic disease.I agree about having the bilateral tumors on the

auditory nerve,maybe its possible I dont have the disease but have the

tumors.This is a strange one.They told me with the blood test that they could

tell in the NF2 gene if I passed it on to my kids.But they couldn't find the

gene.

Lana in Minnesota

[Guest guest]

Marie,

You're righr about the 50% chance of passing it on. What I don't get though

is they gave her a blood test to see if she had the NF2 gene and they didn't

find it. So now I'm think, " how could she pass on the gene when she doesn't

have it? " and " why is does she have bilateral acoustic neuromas and spinal

tumors? A classic sympton of NF2? " I think had a comment on this one,

but I inadvertently deleted it. so , if you don't mind, I'd like to

" hear " what you have to say.

Mark@...!.com

----Original Message Follows----

Reply-To: NF2_Crewonelist

To: <NF2_Crewonelist>

Subject: Re: Gentic Counseling

Date: Sat, 4 Dec 1999 21:21:07 -0500

I have NF2, but when they tested my blood they could not pinpoint the gene;

I understand the test to pinpoint the gene is definitely not 100% effective;

I think I heard something like 60-70%? So there not finding the gene does

NOT mean that YOU don't have NF. And if you have NF, it carries the

possibility of 50% inheritance in your children. Am I right Crew? Marie

Re: Gentic Counseling

>From: Kizzycom@...

>

>Hi ,

>

>The genetics councilor said that they couldn't find the NF2 gene and I

know

>NF2 is a genetic disease.I agree about having the bilateral tumors on

the

>auditory nerve,maybe its possible I dont have the disease but have the

>tumors.This is a strange one.They told me with the blood test that they

could

>tell in the NF2 gene if I passed it on to my kids.But they couldn't find

the

>gene.

>

>Lana in Minnesota

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

>See what's happening for NF2Con 2000!

>http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

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

See what's happening for NF2Con 2000!

http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

[Guest guest]

I have NF2, but when they tested my blood they could not pinpoint the gene;

I understand the test to pinpoint the gene is definitely not 100% effective;

I think I heard something like 60-70%? So there not finding the gene does

NOT mean that YOU don't have NF. And if you have NF, it carries the

possibility of 50% inheritance in your children. Am I right Crew? Marie

Re: Gentic Counseling

>From: Kizzycom@...

>

>Hi ,

>

>The genetics councilor said that they couldn't find the NF2 gene and I know

>NF2 is a genetic disease.I agree about having the bilateral tumors on the

>auditory nerve,maybe its possible I dont have the disease but have the

>tumors.This is a strange one.They told me with the blood test that they

could

>tell in the NF2 gene if I passed it on to my kids.But they couldn't find

the

>gene.

>

>Lana in Minnesota

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

>See what's happening for NF2Con 2000!

>http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

[Guest guest]

,

According to the AN Consensus Statement, if you have BAN then you have NF2.

You can also have NF2 without having BAN.

>

>

>Lana,

>

>I beg to differ: If you don't have the NF2 gene, you don't have NF2. This

>is because NF2 is a genetic disease. I am, however, wondering more and more

>these days if it is possible for a person to develop BAN (bilateral acoustic

>neuroma) without having NF2. When doctors see BAN they automatically

>diagnose NF2, it is the only diagnosis they can make based on diagnostic

>criteria. I am unclear of something. How could they tell if your children

>had NF2 by analysing your blood?

>

>

>

[Guest guest]

Marie,

The NF2 test is not 100% accurate but I think it was above 90% though. I

don't have the numbers to back me up so I could be wrong.

The NF1 test was much less accurate than the NF2 test so the drug company

that developed the test pulled it off the market. M. know alot about this.

>

>

>I have NF2, but when they tested my blood they could not pinpoint the gene;

>I understand the test to pinpoint the gene is definitely not 100% effective;

>I think I heard something like 60-70%? So there not finding the gene does

>NOT mean that YOU don't have NF. And if you have NF, it carries the

>possibility of 50% inheritance in your children. Am I right Crew? Marie

[Guest guest]

I think because they could not FIND it does NOT mean she does not HAVE it.

That's what I understand from Mia MacCollin.

Marie

Re: Gentic Counseling

>

>

> >From: Kizzycom@...

> >

> >Hi ,

> >

> >The genetics councilor said that they couldn't find the NF2 gene and I

>know

> >NF2 is a genetic disease.I agree about having the bilateral tumors on

>the

> >auditory nerve,maybe its possible I dont have the disease but have the

> >tumors.This is a strange one.They told me with the blood test that they

>could

> >tell in the NF2 gene if I passed it on to my kids.But they couldn't find

>the

> >gene.

> >

> >Lana in Minnesota

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

> >See what's happening for NF2Con 2000!

> >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

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

>See what's happening for NF2Con 2000!

>http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

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

>See what's happening for NF2Con 2000!

>http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

[Guest guest]

Hello all!

I just wanted to sound off some info regarding the genetic blood test for

NF2. Both through my reading and from doctors I have been informed that

there is a 44% failure rate for the test. What this means is that almost

half of the time the test will give you a false negative for the NF2 gene.

I assume the reasoning is because the test is so new (I was told it came out

in Jan-Feb of last year) that they do not have their scientific testing

methods fine tuned yet. This is all I know about it for now. I am still

awaiting the results of mine. It takes up to six months to get the results.

Take care everyone!

-Beck )

Re: Gentic Counseling

>From: Kizzycom@...

>

>Hi ,

>

>The genetics councilor said that they couldn't find the NF2 gene and I know

>NF2 is a genetic disease.I agree about having the bilateral tumors on the

>auditory nerve,maybe its possible I dont have the disease but have the

>tumors.This is a strange one.They told me with the blood test that they

could

>tell in the NF2 gene if I passed it on to my kids.But they couldn't find

the

>gene.

>

>Lana in Minnesota

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

>See what's happening for NF2Con 2000!

>http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

[Guest guest]

Hi Crew,

If NF2 shows up in your children at what age is it usually found.???

Lana in Minnesota

[Guest guest]

Hi Beck,

Something appears off here. If the test gives you a 'false negative' 44% of

the time, you may as well stay home and flip a coin. That will save you a

few bucks and you get the test result right away.

A 'false negative' is the worst thing that can happen. You will think you

are home free when in fact you have NF2. Whoever does a test with this kind

of failure rate would have to be very cocky to do it. I read the news

release when the NF1 test was pulled off the market (over a year ago). The

company said the results were not good enough to justify the test. I think

taking the test off the market was the right thing to do.

The NF2 test is still on the market and my understanding is that the test

results are much better than in the NF1 case (I don't have numbers for

eihter test). How you read the 'failure' rate is important. It could be that

the '44% failure rate' means that 44% of the time they cannot determine if

you have NF2 or not. That is different than a 44% 'false negative' where

they say you do NOT have NF2 when you actually DO have NF2. If that were the

case, the test would be virtually useless.

>

>

>Hello all!

>

>I just wanted to sound off some info regarding the genetic blood test for

>NF2. Both through my reading and from doctors I have been informed that

>there is a 44% failure rate for the test. What this means is that almost

>half of the time the test will give you a false negative for the NF2 gene.

>I assume the reasoning is because the test is so new (I was told it came out

>in Jan-Feb of last year) that they do not have their scientific testing

>methods fine tuned yet. This is all I know about it for now. I am still

>awaiting the results of mine. It takes up to six months to get the results.

>

>Take care everyone!

>

>-Beck )

>

> Re: Gentic Counseling

>

>

>>From: Kizzycom@...

>>

>>Hi ,

>>

>>The genetics councilor said that they couldn't find the NF2 gene and I know

>>NF2 is a genetic disease.I agree about having the bilateral tumors on the

>>auditory nerve,maybe its possible I dont have the disease but have the

>>tumors.This is a strange one.They told me with the blood test that they

>could

>>tell in the NF2 gene if I passed it on to my kids.But they couldn't find

>the

>>gene.

>>

>>Lana in Minnesota

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

>>See what's happening for NF2Con 2000!

>>http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

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

>See what's happening for NF2Con 2000!

>http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

>

>

[Guest guest]

Hi ,

I agree with you there 100% it comes whenever it wants to no no matter what

age.I heard once that 40 percent of the people in the United States that are

otopsied are found to have AN's.

Lana in Minnesota

[Guest guest]

Hi Marnie,

I have 2 children,my son is 15 and my daughter Cherry is 13 and soon

to be 14.I heard puberty for some reason was a trigger.Meanwhile I keep a

close eye on my children and pray to god.How do cope?I would be lost if I

knew one of the childrren had it.I have been through hell because of

this.Thanks for answering me

Smiles from Minnesota Lana

[Guest guest]

Lana,

Everyone is different. If your concerned that your children may have nf then

have an mri performed to rule it out. My daughter was diagnosed at eight

years old. She had fibromas on her back. Nf2 does not run in our family.

If anyone else in your family has nf2 then you should definitly have them

checked out soon. from ny

[Guest guest]

I'm curious how many of the Crewbies are the first person in their family to

be diagnosed with NF. If it's your child who has NF, do you too? Or someone

else in your family?

I'm the very first person on both sides of my family. My Mom died from

Breast Cancer at a very young age and there are various afflictions in the

family. But there is absolutely noone else with NF.

Let me know. I'm curious!

June

[Guest guest]

Hi June,

I am the very first person in my family to show up with it.My dr.told me that

the genentic make-up off my mother and father mutated the disease and I

happen to get it.

Lana

[Guest guest]

Hi ,

I have had my kids checked on and off through the years for Nf2 and one has

had a ct scan and the other an mri,so I am keeping my fingers crossed.Nf2

does not run in our family and I am the first to show up with it.

Lana in Minnesota

[Guest guest]

i am

[Guest guest]

Lana,

Your guess is probably as good as anyone's.... NF-too is 2 unpredictable...

>From: Kizzycom@...

>

>Hi Crew,

>

>If NF2 shows up in your children at what age is it usually found.???

>

>Lana in Minnesota

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

>See what's happening for NF2Con 2000!

>http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

>

>

[Guest guest]

At 07:00 PM 12/6/99 EST, you wrote:

>From: Kizzycom@...

>

>Hi Crew,

>

>If NF2 shows up in your children at what age is it usually found.???

>

>Lana in Minnesota

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

>See what's happening for NF2Con 2000!

>http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

>

Lana

I was told that when puberty hits and your hormones go nuts is the best

time to be tested for it! 1 out of 3 of my children have NF2.

Marnie

[Guest guest]

ManelyCat@... wrote:

>

> From: ManelyCat@...

>

> Well, I thought you might like to know that EVERY one of the replies to my

> question that asked if you were the first in your family diagnosed with NF2,

> was YES! Including myself, I've only had 9 people who responded.

>

> Anyone else care to respond? Are there any " generation " people out there who

> have NF2 passed down from generation to generation?

>

> June

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

> See what's happening for NF2Con 2000!

> http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

Generation to generation, my husband his mother grandmother and great

grandmother. We don't know further than that.

[Guest guest]

Hi Joanie,

Thanks for the information on hormone's,this morning I can barely see my eyes

are so blury and I just put medicene in them.I am so behind on everything and

there is so much to do.You ever have days like that.I was planning on getting

some christmas shopping done today but will have to wait until my eyes feel

better.Back to the hormoans,I have heard there not a good idea for us to take

and I don't like the thought of taking them either.I'ts always some for us

isn't it.

lana in Minnesota

[Guest guest]

Hi Joanie,

I know what you mean,I am a spontanious mutation also.HMMMM kinda makes you

feel like a Ninja Turtle :)heheh.

Lana in Minnesota