Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 Hey lana, If 40% of people in the US who are autopsied (sp) are found to have ANs, then why is NF2 considered so rare? June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 Lana, ..I heard puberty for some reason was a trigger. It is because of the hormonal changes in the body. I know you are not old, but you are reaching the age of menopause. You and us qwomen with NF2 really need to be very careful with hormonal treatment at this time. I do think a while back we had a talk about hormonal treatments with NF2 and if not mistaken it was recommened that we DON'T use hormonal treatment. Joanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 June, I am the first in my family with NF2. I am a spontanous mutation, as my DR ( Martuza) told me. Sounds like something out of a 1950's horror film...The Spontanous Mutation:) Joanie and lana if your children have this.....they have it. several crewbies have children that have NF2. yes, it is hard, but I think it is mych easier today to have this then when I was first diagnosed back in 1985 when they knew NOTHING about this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 Lana, NF2 runs in your family now. Keep an eye on your kids. JC, not to be confused with Jesus Christ ..Nf2 > does not run in our family and I am the first to show up with it. > > Lana in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 I don't know if my mom had NF or not. She died before my NF reared it's ugly head. There is no one else in my family (Aunts, Uncles, Cousins, etc...) that has it. BUT, I think I might ask my Dad and my brother and sister to be tested again. They were tested way back when I was first diagnosed in 1983 and I think that the tests are far more advanced now. So I think I'm going to bring it up with my Dad. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 hmmm...ok Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 VERY CUTE, JIMMY! VERY CUTE! ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 I am the first in my family, but I know of two friends who have NF and both have breast cancer; wonder if there is any connection. marie Re: Gentic Counseling >From: ManelyCat@... > >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 >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 the statistic regarding ANs refers to unilateral ans; much more common than bi-lateral/nf2 ans. marie Re: Gentic Counseling >Date: Tue, 7 Dec 1999 14:24:32 EST > >From: ManelyCat@... > >Hey lana, > >If 40% of people in the US who are autopsied (sp) are found to have ANs, >then >why is NF2 considered so rare? > >June >------------------------------------------------------------------------ >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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 I'm a generation person.I got nf2 from mommy.My sister had nf2 and maybe even our dog(j/k) Jimmy Re: Gentic Counseling > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 Jimmy, Was your mother a spontaneous mutation, and then it was passed to you and your sister? Or did your mother inherit it from one of her parents? Thanks! -Beck (I am making a file of all SMs) Re: Gentic Counseling > > >I'm a generation person.I got nf2 from mommy.My sister had nf2 and maybe >even our dog(j/k) >Jimmy > Re: Gentic Counseling > > >> 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 >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1999 Report Share Posted December 8, 1999 Hi June, My daughter a is the first in our family to have nf2 also. from ny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1999 Report Share Posted December 8, 1999 Hi June, Can't rmember if I responded or not but I am the first one in my family to show up with NF. Lana in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1999 Report Share Posted December 8, 1999 Hi, I am a " generation " person. My father has and gave me NF2. Not sure about his parents because they died in India many years ago at a time when there was very poor medical services in India. But it's very possible one of them had it too. Not sure about my kids because I don't have any! I'm 21. -nisha >From: ManelyCat@... >Reply-To: NF2_Crewonelist >To: NF2_Crewonelist >Subject: Re: Gentic Counseling >Date: Tue, 7 Dec 1999 23:19:42 EST > >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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1999 Report Share Posted December 8, 1999 June -- In answer to your informal survey: I'm a first-generation, spontaneous mutant; none of my brothers and sisters has the disease; and I don't have any children. And to Jimmy--my cat seems NF-2 free. Steve Cherrington Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1999 Report Share Posted December 8, 1999 Hay Beckster, I've taken Genetics 101, so let me clarify a few things. 1. You definitely are a mutation if neither of your parents have NF2. 2. The NF2 gene is dominant, always. It is the autosomal dominant trait which gives you the 50/50 chance. Any questions? Just ask! , PhB If it does not, it could possibly reflect > something about whether I am a mutation. I was hoping it might be able to > determine if I have a dominant or recessive gene for NF2 in relation to > passing in on to offspring. I know the chance is still 50/50 but just > wishful thinking I guess. ) > > Take care! > Beck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1999 Report Share Posted December 8, 1999 Hi Nisha, just wanted to tell you I have downloaded the new AOL version, as did my daughter in law who lives on the other side of the United States. We are going to try it tonight. Thanks for the tip. Marie Re: Gentic Counseling >>Date: Tue, 7 Dec 1999 23:19:42 EST >> >>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 >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1999 Report Share Posted December 8, 1999 June, The statistic is actually a lot higher, but the ANs are usually pretty small, and don't affect anything. The presence of one AN does not indicate NF2. There are diagnostic guidelines written for NF2: Table 1. Diagnostic Criteria for NF2 Bilateral vestibular schwannomas (VS) OR family history of NF2 plus Unilateral VS or Any two of: meningioma, glioma, neurofibroma, schwannoma, posterior subcapsular lenticular opacities (SLO). Additional criteria Unilateral VS + any 2 of: meningioma, glioma, neurofibroma, schwannoma, SLO. Multiple meningiomas (2 or more) + unilateral VS or any 2 of: glioma, neurofibroma, schwannoma, cataract, cerebral calcification. > From: ManelyCat@... > > Hey lana, > > If 40% of people in the US who are autopsied (sp) are found to have ANs, then > why is NF2 considered so rare? > > June > ------------------------------------------------------------------------ > See what's happening for NF2Con 2000! > http://www.home.earthlink.net/~earldillon/nf2convegas2000.html > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1999 Report Share Posted December 8, 1999 Lana, The vast majority of those people have unilateral AN's only. Also, the AN grew over the person's lifetime and was too small by the time they died to cause any trouble. Basically, the person lived their life with an AN but never knew they had it. The 40% figure seems a little high. I heard about this a long time ago and seem to recall the figure being about 1% or so. >From: ManelyCat@... > >Hey lana, > >If 40% of people in the US who are autopsied (sp) are found to have ANs, then >why is NF2 considered so rare? > >June >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1999 Report Share Posted December 8, 1999 Hi Beck, The NF2 Gene is dominant. This is why a parent with NF2 has a 50/50 chance of passing it on. I would tend agree with you that the first doctors you saw did not know alot about NF2. Looks like they did not know alot about the test either. With a 44% failure rate, the test would be useless. I'll see if I can find the failure rate somewhere and I'll post it. > > >, > >Yes the test does have a 44% inaccuracy rate. I think that may be how they >stumble upon these different subtypes of NF2 (not sure how though). I did >not order the test. It appears that when I first had a diagnosis, the >neurology team I was seeing was unsure (which lead me to believe they have >not dealt with NF2 before). So in the meantime, they sent me to a >neurosurgeon at a Gamma Knife Center who said NF2 is exactly what I have and >why. I think the doctors at the other place had me take the test to cover >their ass. I don't know if they knew anything about the failure rate. It >is a long story. I chose not to get the GK because I was not entirely >pleased with what the outcome would be. I almost forgot all about the test >until someone mentioned it on here. I guess the only use it might be is >whether or not it shows up. If it does not, it could possibly reflect >something about whether I am a mutation. I was hoping it might be able to >determine if I have a dominant or recessive gene for NF2 in relation to >passing in on to offspring. I know the chance is still 50/50 but just >wishful thinking I guess. ) > >Take care! >Beck >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1999 Report Share Posted December 8, 1999 June, I am the only one in my family with NF2. >From: ManelyCat@... > >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 >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 1999 Report Share Posted December 9, 1999 HI JASON, SOMEONE ELSE ON THIS SITE SAID 40%. I DIDN'T BRING THAT UP. I, MYSELF, WAS DUMBFOUNDED BY THE PERCENTAGE. THAT'S WHY I WROTE WHAT I DID. I GUESS I DIDN'T MAKE IT CLEAR ENOUGH. SORRY ( JUNE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 1999 Report Share Posted December 9, 1999 HAHA I ALSO AGREE WITH YOU ABOUT GOOD LOOKS, JASON. DEFINATELY A DISEASE....POOR RICKY MARTIN...CINDY CRAWFORD... POOR THINGS ) JUNE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 1999 Report Share Posted December 9, 1999 Mar, et al, I just read today that although the NF2 rate is 1:40 000, the actual number of cases that are diagnosed is only about 1:200 000: " NF2 affects approximately 1 in 35 to 40,000 peop1e.[15] However, because many patients do not exhibit features of the condition until the third decade or later and many other patients die before this time, the actual diagnostic prevalence is only 1 in 200,000. " from http://www.medscape.com/medquest/ENT/1999/v78.n02/ent7802.02.evan/ent7802.02 ..evan-02.html Sounds fishy to me! BTW, 1:40 000 is quite rare, that's only 25 in 1 000 000. > > > Because it only strikes 1 in 40,000 I think. > > Mark > > Quote Link to comment Share on other sites More sharing options...
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