Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 Because it only strikes 1 in 40,000 I think. Mark ----Original Message Follows---- From: ManelyCat@... Reply-To: NF2_Crewonelist To: NF2_Crewonelist Subject: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 Because it only strikes 1 in 40,000 I think. Mark ----Original Message Follows---- From: ManelyCat@... Reply-To: NF2_Crewonelist To: NF2_Crewonelist Subject: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 Hi June, good question? Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 <G> Ok J.C. I won't get you 2 mixed up I do keep a close eye on my kids,and pray like hell:) Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 Sorry Mark, But I don't consider 40 out of 100 or 400 out of 1000 to be that rare. I think there's something screwy with that statistic. Maybe they're including all types of NF? ALTHOUGH, I have met very many NF2ers here on the site. I kind of feel like I'm at home here. ) Maybe there are a heck of a lot more of us than I thought! Is there some kind of directory in print, not on the computer, of all the members of the NF2 Crew? And who would have that? My 2 cents...June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 Sorry Mark, But I don't consider 40 out of 100 or 400 out of 1000 to be that rare. I think there's something screwy with that statistic. Maybe they're including all types of NF? ALTHOUGH, I have met very many NF2ers here on the site. I kind of feel like I'm at home here. ) Maybe there are a heck of a lot more of us than I thought! Is there some kind of directory in print, not on the computer, of all the members of the NF2 Crew? And who would have that? My 2 cents...June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 1999 Report Share Posted December 7, 1999 , 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 1999 Report Share Posted December 14, 1999 In a message dated 12/10/1999 7:50:14 PM Pacific Standard Time, mcdrew@... writes: << Tony, I wonder if you would complete the radiosurgery questionnaire I sent out? Most of the replies I have received have to do with gamma knife, and your results would help add to the info. If you need another copy, let me know. Marie >> deleted it by accident--need another copy tr Quote Link to comment Share on other sites More sharing options...
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