Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Hi Marie, I think you are correct that some people have both NF1 and NF2 symtoms. I went to the ANAC general meeting not long ago. Dr. Guha (who is a bit of an NF2 expert on this side of the boarder) gave a detailed presentation on NF2. Unfortunately, it was not captioned but there was an interpreter there. My ASL is not good but the sides were excellent. I believe he also thinks some people have NF1 and NF2. He also mentioned that people who get NF2 later in life seem to have 'milder' symtoms while early onset tends to be more aggressive. He also showed an excellent picture of the NF2 tumor vs. the unilateral tumor. The NF2 tumor tends to grow within the nerve making it much harder to remove than the unilateral tumor which grows on the nerve and compresses it. I have seen this in an 1984 medical article so it has been known for a long time. However, many people I talk to think the tumors are the same. The last tid bit you may be interested.... In mice, if the baby where to get the NF2 gene from both parents, it would not live. Mendelsohn told me once if someone were to get NF2 from both parents (a highly unlikely case) the child would not live. He never told me it was done on mice so I was never sure how he knew. Re: New Members & Harry Vershaw > Seems to add more weight to the theories about NF2 and NF1 not always being > completely separate, and that maybe somebody can have NF1 and NF2?? Marie > -----Original Message----- > > To: NF2_Crew <NF2_Crew > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 guess that means fellow crewbies shud NOT procreate! Ive seen and heard enough to believe nf1 and nf2 most definietly does over lap no matter what dr's and researchers contend. We should all have doctorate degrees! Fusca wrote: > Hi Marie, > > I think you are correct that some people have both NF1 and NF2 symtoms. I > went to the ANAC general meeting not long ago. Dr. Guha (who is a bit of an > NF2 expert on this side of the boarder) gave a detailed presentation on NF2. > Unfortunately, it was not captioned but there was an interpreter there. My > ASL is not good but the sides were excellent. I believe he also thinks some > people have NF1 and NF2. He also mentioned that people who get NF2 later in > life seem to have 'milder' symtoms while early onset tends to be more > aggressive. > > He also showed an excellent picture of the NF2 tumor vs. the unilateral > tumor. The NF2 tumor tends to grow within the nerve making it much harder to > remove than the unilateral tumor which grows on the nerve and compresses it. > I have seen this in an 1984 medical article so it has been known for a long > time. However, many people I talk to think the tumors are the same. > > The last tid bit you may be interested.... In mice, if the baby where to get > the NF2 gene from both parents, it would not live. Mendelsohn told me > once if someone were to get NF2 from both parents (a highly unlikely case) > the child would not live. He never told me it was done on mice so I was > never sure how he knew. > > > > > Re: New Members & Harry Vershaw > > > Seems to add more weight to the theories about NF2 and NF1 not always > being > > completely separate, and that maybe somebody can have NF1 and NF2?? Marie > > -----Original Message----- > > > > To: NF2_Crew <NF2_Crew > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 guess that means fellow crewbies shud NOT procreate! Ive seen and heard enough to believe nf1 and nf2 most definietly does over lap no matter what dr's and researchers contend. We should all have doctorate degrees! Fusca wrote: > Hi Marie, > > I think you are correct that some people have both NF1 and NF2 symtoms. I > went to the ANAC general meeting not long ago. Dr. Guha (who is a bit of an > NF2 expert on this side of the boarder) gave a detailed presentation on NF2. > Unfortunately, it was not captioned but there was an interpreter there. My > ASL is not good but the sides were excellent. I believe he also thinks some > people have NF1 and NF2. He also mentioned that people who get NF2 later in > life seem to have 'milder' symtoms while early onset tends to be more > aggressive. > > He also showed an excellent picture of the NF2 tumor vs. the unilateral > tumor. The NF2 tumor tends to grow within the nerve making it much harder to > remove than the unilateral tumor which grows on the nerve and compresses it. > I have seen this in an 1984 medical article so it has been known for a long > time. However, many people I talk to think the tumors are the same. > > The last tid bit you may be interested.... In mice, if the baby where to get > the NF2 gene from both parents, it would not live. Mendelsohn told me > once if someone were to get NF2 from both parents (a highly unlikely case) > the child would not live. He never told me it was done on mice so I was > never sure how he knew. > > > > > Re: New Members & Harry Vershaw > > > Seems to add more weight to the theories about NF2 and NF1 not always > being > > completely separate, and that maybe somebody can have NF1 and NF2?? Marie > > -----Original Message----- > > > > To: NF2_Crew <NF2_Crew > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Hey , I did not say anything about procreating at all... I have 2 kids of my own. This is a hot topic by itself. What convinced me its OK to have kids was a story written by a small town couple about their son with NF1. I can't recall the details but it went something like this: The couple was heart broken when they learned their son had NF1. The loved their son of course and as time went on they were unsure if they should have more kids. In the end, they decided to have another baby. This was because they loved their NF1 son. They loved all of him. The NF1 was a part of him and they loved that too. They did not love him any less because he had NF1. They would not want the new baby to have NF1 but would love their new baby just as much if it had or did not have NF1. Anyway, the story was touching and they said it better than me (sorry folks - you missed a good story). The bottom line for me is.... it's OK to have kids. If you see it differently, thats OK too. One last thing while I am one the subject. Did you ever feel that NF2 was the worst thing in the world? I know I certainly felt that way for a long time. But would you rather have a child with NF2 or like a seemingly bright person that would even remotely consider something like the 9/11 attacks?? In any case, I have a hockey story for you! Our son (Francesco) plays House League Hockey. We had a very exciting game a few weeks ago. It was tied with about a minute left. Then the other team scored to go ahead. Francesco got a break-away with about 30 seconds left. The goalie stopped him. He shot again but the goalie stopped it and then the game was over. My son was crying after he came off the ice and would not go in the dressing room (I guess he took it hard on himself for not scoring to tie the game again and did not want to look at his teammates). Anyway, I had to call the coach to come to say something to him so he would go in the dressing room. The coach told him we can't win every game. Francesco is a good player but he does not have a knack for putting the puck in the net. Today was the first playoff game and we played that very same team! In was another close game. We scored on a long shot from the blue line and I noticed their goalie was having trouble with long shots. I went to our bench and told Francesco the shoot long on the goalie. Later, Francesco gets a break-a-way. He takes a long shot (as opposed to waiting til he is close to the goalie) and he scored!! His team went on the win 4-3 in a close game. Francesco is not the best player on his team but the coach aways tells me he plays with a lot of heart. NF2 or no NF2 you'll be pressed to find a better 6 year old anywhere! His sister is pretty much the same (she wants to play hockey next year!) Re: NF2/NF1 > guess that means fellow crewbies shud NOT procreate! Ive seen and heard enough > to believe nf1 and nf2 most definietly does over lap no matter what dr's and > researchers contend. We should all have doctorate degrees! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 THANKS FRANK FOR POSTING THIS INTERESTING INFORMATION PLEASE TEL YOUR WIFE I SAID HELLO CATHERINE > Re: NF2/NF1 > > > Hi Marie, > > I think you are correct that some people have both NF1 and NF2 symtoms. I > went to the ANAC general meeting not long ago. Dr. Guha (who is a > bit of an > NF2 expert on this side of the boarder) gave a detailed > presentation on NF2. > Unfortunately, it was not captioned but there was an interpreter there. My > ASL is not good but the sides were excellent. I believe he also > thinks some > people have NF1 and NF2. He also mentioned that people who get > NF2 later in > life seem to have 'milder' symtoms while early onset tends to be more > aggressive. > > He also showed an excellent picture of the NF2 tumor vs. the unilateral > tumor. The NF2 tumor tends to grow within the nerve making it > much harder to > remove than the unilateral tumor which grows on the nerve and > compresses it. > I have seen this in an 1984 medical article so it has been known > for a long > time. However, many people I talk to think the tumors are the same. > > The last tid bit you may be interested.... In mice, if the baby > where to get > the NF2 gene from both parents, it would not live. Mendelsohn told me > once if someone were to get NF2 from both parents (a highly unlikely case) > the child would not live. He never told me it was done on mice so I was > never sure how he knew. > > > > > Re: New Members & Harry Vershaw > > > > Seems to add more weight to the theories about NF2 and NF1 not always > being > > completely separate, and that maybe somebody can have NF1 and > NF2?? Marie > > -----Original Message----- > > > > To: NF2_Crew <NF2_Crew > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 I AGREE WITH THAT CINDY. WE LEARN SO MUCH FROM EACH OTHER. I THINK THE MEDICAL WORLD IS STILL LEARNING ABOUT NF CATHERINE > Re: NF2/NF1 > > > guess that means fellow crewbies shud NOT procreate! Ive seen > and heard enough > to believe nf1 and nf2 most definietly does over lap no matter > what dr's and > researchers contend. We should all have doctorate degrees! > > Fusca wrote: > > > Hi Marie, > > > > I think you are correct that some people have both NF1 and NF2 > symtoms. I > > went to the ANAC general meeting not long ago. Dr. Guha (who is > a bit of an > > NF2 expert on this side of the boarder) gave a detailed > presentation on NF2. > > Unfortunately, it was not captioned but there was an > interpreter there. My > > ASL is not good but the sides were excellent. I believe he also > thinks some > > people have NF1 and NF2. He also mentioned that people who get > NF2 later in > > life seem to have 'milder' symtoms while early onset tends to be more > > aggressive. > > > > He also showed an excellent picture of the NF2 tumor vs. the unilateral > > tumor. The NF2 tumor tends to grow within the nerve making it > much harder to > > remove than the unilateral tumor which grows on the nerve and > compresses it. > > I have seen this in an 1984 medical article so it has been > known for a long > > time. However, many people I talk to think the tumors are the same. > > > > The last tid bit you may be interested.... In mice, if the baby > where to get > > the NF2 gene from both parents, it would not live. > Mendelsohn told me > > once if someone were to get NF2 from both parents (a highly > unlikely case) > > the child would not live. He never told me it was done on mice so I was > > never sure how he knew. > > > > > > > > > > Re: New Members & Harry Vershaw > > > > > Seems to add more weight to the theories about NF2 and NF1 not always > > being > > > completely separate, and that maybe somebody can have NF1 and > NF2?? Marie > > > -----Original Message----- > > > > > > To: NF2_Crew <NF2_Crew > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 I AGREE WITH THAT CINDY. WE LEARN SO MUCH FROM EACH OTHER. I THINK THE MEDICAL WORLD IS STILL LEARNING ABOUT NF CATHERINE > Re: NF2/NF1 > > > guess that means fellow crewbies shud NOT procreate! Ive seen > and heard enough > to believe nf1 and nf2 most definietly does over lap no matter > what dr's and > researchers contend. We should all have doctorate degrees! > > Fusca wrote: > > > Hi Marie, > > > > I think you are correct that some people have both NF1 and NF2 > symtoms. I > > went to the ANAC general meeting not long ago. Dr. Guha (who is > a bit of an > > NF2 expert on this side of the boarder) gave a detailed > presentation on NF2. > > Unfortunately, it was not captioned but there was an > interpreter there. My > > ASL is not good but the sides were excellent. I believe he also > thinks some > > people have NF1 and NF2. He also mentioned that people who get > NF2 later in > > life seem to have 'milder' symtoms while early onset tends to be more > > aggressive. > > > > He also showed an excellent picture of the NF2 tumor vs. the unilateral > > tumor. The NF2 tumor tends to grow within the nerve making it > much harder to > > remove than the unilateral tumor which grows on the nerve and > compresses it. > > I have seen this in an 1984 medical article so it has been > known for a long > > time. However, many people I talk to think the tumors are the same. > > > > The last tid bit you may be interested.... In mice, if the baby > where to get > > the NF2 gene from both parents, it would not live. > Mendelsohn told me > > once if someone were to get NF2 from both parents (a highly > unlikely case) > > the child would not live. He never told me it was done on mice so I was > > never sure how he knew. > > > > > > > > > > Re: New Members & Harry Vershaw > > > > > Seems to add more weight to the theories about NF2 and NF1 not always > > being > > > completely separate, and that maybe somebody can have NF1 and > NF2?? Marie > > > -----Original Message----- > > > > > > To: NF2_Crew <NF2_Crew > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 THIS IS ABSOLUTELY BEAUTIFUL FRANK THANK YOU SO VERY MUCH FOR SHARING IT. YOU AND SANDRA ARE BLESSED WITH TWO BEAUTIFUL CHILDREN MAY GOD CONTINUE TO BLESS YOUR FAMILY CATHERINE > Re: NF2/NF1 > > > Hey , > > I did not say anything about procreating at all... I have 2 kids > of my own. > This is a hot topic by itself. What convinced me its OK to have kids was a > story written by a small town couple about their son with NF1. I can't > recall the details but it went something like this: > > The couple was heart broken when they learned their son had NF1. The loved > their son of course and as time went on they were unsure if they > should have > more kids. In the end, they decided to have another baby. This was because > they loved their NF1 son. They loved all of him. The NF1 was a part of him > and they loved that too. They did not love him any less because > he had NF1. > They would not want the new baby to have NF1 but would love their new baby > just as much if it had or did not have NF1. Anyway, the story was touching > and they said it better than me (sorry folks - you missed a good > story). The > bottom line for me is.... it's OK to have kids. If you see it differently, > thats OK too. One last thing while I am one the subject. Did you ever feel > that NF2 was the worst thing in the world? I know I certainly > felt that way > for a long time. But would you rather have a child with NF2 or like a > seemingly bright person that would even remotely consider > something like the > 9/11 attacks?? > > In any case, I have a hockey story for you! Our son (Francesco) > plays House > League Hockey. We had a very exciting game a few weeks ago. It > was tied with > about a minute left. Then the other team scored to go ahead. > Francesco got a > break-away with about 30 seconds left. The goalie stopped him. He > shot again > but the goalie stopped it and then the game was over. My son was crying > after he came off the ice and would not go in the dressing room > (I guess he > took it hard on himself for not scoring to tie the game again and did not > want to look at his teammates). Anyway, I had to call the coach to come to > say something to him so he would go in the dressing room. The > coach told him > we can't win every game. Francesco is a good player but he does not have a > knack for putting the puck in the net. Today was the first > playoff game and > we played that very same team! In was another close game. We scored on a > long shot from the blue line and I noticed their goalie was having trouble > with long shots. I went to our bench and told Francesco the shoot long on > the goalie. Later, Francesco gets a break-a-way. He takes a long shot (as > opposed to waiting til he is close to the goalie) and he scored!! His team > went on the win 4-3 in a close game. Francesco is not the best > player on his > team but the coach aways tells me he plays with a lot of heart. NF2 or no > NF2 you'll be pressed to find a better 6 year old anywhere! His sister is > pretty much the same (she wants to play hockey next year!) > > > > > Re: NF2/NF1 > > > > guess that means fellow crewbies shud NOT procreate! Ive seen and heard > enough > > to believe nf1 and nf2 most definietly does over lap no matter what dr's > and > > researchers contend. We should all have doctorate degrees! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 , let me restaTE, I meant if both parents have nf2 than they shud not have kids by normal methods, you said if the kid inherits it from both parents it wud die. Fusca wrote: > Hey , > > I did not say anything about procreating at all... I have 2 kids of my own. > This is a hot topic by itself. What convinced me its OK to have kids was a > story written by a small town couple about their son with NF1. I can't > recall the details but it went something like this: > > The couple was heart broken when they learned their son had NF1. The loved > their son of course and as time went on they were unsure if they should have > more kids. In the end, they decided to have another baby. This was because > they loved their NF1 son. They loved all of him. The NF1 was a part of him > and they loved that too. They did not love him any less because he had NF1. > They would not want the new baby to have NF1 but would love their new baby > just as much if it had or did not have NF1. Anyway, the story was touching > and they said it better than me (sorry folks - you missed a good story). The > bottom line for me is.... it's OK to have kids. If you see it differently, > thats OK too. One last thing while I am one the subject. Did you ever feel > that NF2 was the worst thing in the world? I know I certainly felt that way > for a long time. But would you rather have a child with NF2 or like a > seemingly bright person that would even remotely consider something like the > 9/11 attacks?? > > In any case, I have a hockey story for you! Our son (Francesco) plays House > League Hockey. We had a very exciting game a few weeks ago. It was tied with > about a minute left. Then the other team scored to go ahead. Francesco got a > break-away with about 30 seconds left. The goalie stopped him. He shot again > but the goalie stopped it and then the game was over. My son was crying > after he came off the ice and would not go in the dressing room (I guess he > took it hard on himself for not scoring to tie the game again and did not > want to look at his teammates). Anyway, I had to call the coach to come to > say something to him so he would go in the dressing room. The coach told him > we can't win every game. Francesco is a good player but he does not have a > knack for putting the puck in the net. Today was the first playoff game and > we played that very same team! In was another close game. We scored on a > long shot from the blue line and I noticed their goalie was having trouble > with long shots. I went to our bench and told Francesco the shoot long on > the goalie. Later, Francesco gets a break-a-way. He takes a long shot (as > opposed to waiting til he is close to the goalie) and he scored!! His team > went on the win 4-3 in a close game. Francesco is not the best player on his > team but the coach aways tells me he plays with a lot of heart. NF2 or no > NF2 you'll be pressed to find a better 6 year old anywhere! His sister is > pretty much the same (she wants to play hockey next year!) > > > > Re: NF2/NF1 > > > guess that means fellow crewbies shud NOT procreate! Ive seen and heard > enough > > to believe nf1 and nf2 most definietly does over lap no matter what dr's > and > > researchers contend. We should all have doctorate degrees! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 , let me restaTE, I meant if both parents have nf2 than they shud not have kids by normal methods, you said if the kid inherits it from both parents it wud die. Fusca wrote: > Hey , > > I did not say anything about procreating at all... I have 2 kids of my own. > This is a hot topic by itself. What convinced me its OK to have kids was a > story written by a small town couple about their son with NF1. I can't > recall the details but it went something like this: > > The couple was heart broken when they learned their son had NF1. The loved > their son of course and as time went on they were unsure if they should have > more kids. In the end, they decided to have another baby. This was because > they loved their NF1 son. They loved all of him. The NF1 was a part of him > and they loved that too. They did not love him any less because he had NF1. > They would not want the new baby to have NF1 but would love their new baby > just as much if it had or did not have NF1. Anyway, the story was touching > and they said it better than me (sorry folks - you missed a good story). The > bottom line for me is.... it's OK to have kids. If you see it differently, > thats OK too. One last thing while I am one the subject. Did you ever feel > that NF2 was the worst thing in the world? I know I certainly felt that way > for a long time. But would you rather have a child with NF2 or like a > seemingly bright person that would even remotely consider something like the > 9/11 attacks?? > > In any case, I have a hockey story for you! Our son (Francesco) plays House > League Hockey. We had a very exciting game a few weeks ago. It was tied with > about a minute left. Then the other team scored to go ahead. Francesco got a > break-away with about 30 seconds left. The goalie stopped him. He shot again > but the goalie stopped it and then the game was over. My son was crying > after he came off the ice and would not go in the dressing room (I guess he > took it hard on himself for not scoring to tie the game again and did not > want to look at his teammates). Anyway, I had to call the coach to come to > say something to him so he would go in the dressing room. The coach told him > we can't win every game. Francesco is a good player but he does not have a > knack for putting the puck in the net. Today was the first playoff game and > we played that very same team! In was another close game. We scored on a > long shot from the blue line and I noticed their goalie was having trouble > with long shots. I went to our bench and told Francesco the shoot long on > the goalie. Later, Francesco gets a break-a-way. He takes a long shot (as > opposed to waiting til he is close to the goalie) and he scored!! His team > went on the win 4-3 in a close game. Francesco is not the best player on his > team but the coach aways tells me he plays with a lot of heart. NF2 or no > NF2 you'll be pressed to find a better 6 year old anywhere! His sister is > pretty much the same (she wants to play hockey next year!) > > > > Re: NF2/NF1 > > > guess that means fellow crewbies shud NOT procreate! Ive seen and heard > enough > > to believe nf1 and nf2 most definietly does over lap no matter what dr's > and > > researchers contend. We should all have doctorate degrees! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 I think it's agreed that early onset is usually a more severe case. Of course, how much of early onset is due to better diagnostic abilities now, I don't know. I think the NF2/NF1 combination is something the Crew is going to realize before the doctors accept it. Marie Re: NF2/NF1 >Hi Marie, > >I think you are correct that some people have both NF1 and NF2 symtoms. I >went to the ANAC general meeting not long ago. Dr. Guha (who is a bit of an >NF2 expert on this side of the boarder) gave a detailed presentation on NF2. >Unfortunately, it was not captioned but there was an interpreter there. My >ASL is not good but the sides were excellent. I believe he also thinks some >people have NF1 and NF2. He also mentioned that people who get NF2 later in >life seem to have 'milder' symtoms while early onset tends to be more >aggressive. > >He also showed an excellent picture of the NF2 tumor vs. the unilateral >tumor. The NF2 tumor tends to grow within the nerve making it much harder to >remove than the unilateral tumor which grows on the nerve and compresses it. >I have seen this in an 1984 medical article so it has been known for a long >time. However, many people I talk to think the tumors are the same. > >The last tid bit you may be interested.... In mice, if the baby where to get >the NF2 gene from both parents, it would not live. Mendelsohn told me >once if someone were to get NF2 from both parents (a highly unlikely case) >the child would not live. He never told me it was done on mice so I was >never sure how he knew. > > > > > Re: New Members & Harry Vershaw > > >> Seems to add more weight to the theories about NF2 and NF1 not always >being >> completely separate, and that maybe somebody can have NF1 and NF2?? Marie >> -----Original Message----- >> >> To: NF2_Crew <NF2_Crew > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 I think it's agreed that early onset is usually a more severe case. Of course, how much of early onset is due to better diagnostic abilities now, I don't know. I think the NF2/NF1 combination is something the Crew is going to realize before the doctors accept it. Marie Re: NF2/NF1 >Hi Marie, > >I think you are correct that some people have both NF1 and NF2 symtoms. I >went to the ANAC general meeting not long ago. Dr. Guha (who is a bit of an >NF2 expert on this side of the boarder) gave a detailed presentation on NF2. >Unfortunately, it was not captioned but there was an interpreter there. My >ASL is not good but the sides were excellent. I believe he also thinks some >people have NF1 and NF2. He also mentioned that people who get NF2 later in >life seem to have 'milder' symtoms while early onset tends to be more >aggressive. > >He also showed an excellent picture of the NF2 tumor vs. the unilateral >tumor. The NF2 tumor tends to grow within the nerve making it much harder to >remove than the unilateral tumor which grows on the nerve and compresses it. >I have seen this in an 1984 medical article so it has been known for a long >time. However, many people I talk to think the tumors are the same. > >The last tid bit you may be interested.... In mice, if the baby where to get >the NF2 gene from both parents, it would not live. Mendelsohn told me >once if someone were to get NF2 from both parents (a highly unlikely case) >the child would not live. He never told me it was done on mice so I was >never sure how he knew. > > > > > Re: New Members & Harry Vershaw > > >> Seems to add more weight to the theories about NF2 and NF1 not always >being >> completely separate, and that maybe somebody can have NF1 and NF2?? Marie >> -----Original Message----- >> >> To: NF2_Crew <NF2_Crew > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 I think it's agreed that early onset is usually a more severe case. Of course, how much of early onset is due to better diagnostic abilities now, I don't know. I think the NF2/NF1 combination is something the Crew is going to realize before the doctors accept it. Marie Re: NF2/NF1 >Hi Marie, > >I think you are correct that some people have both NF1 and NF2 symtoms. I >went to the ANAC general meeting not long ago. Dr. Guha (who is a bit of an >NF2 expert on this side of the boarder) gave a detailed presentation on NF2. >Unfortunately, it was not captioned but there was an interpreter there. My >ASL is not good but the sides were excellent. I believe he also thinks some >people have NF1 and NF2. He also mentioned that people who get NF2 later in >life seem to have 'milder' symtoms while early onset tends to be more >aggressive. > >He also showed an excellent picture of the NF2 tumor vs. the unilateral >tumor. The NF2 tumor tends to grow within the nerve making it much harder to >remove than the unilateral tumor which grows on the nerve and compresses it. >I have seen this in an 1984 medical article so it has been known for a long >time. However, many people I talk to think the tumors are the same. > >The last tid bit you may be interested.... In mice, if the baby where to get >the NF2 gene from both parents, it would not live. Mendelsohn told me >once if someone were to get NF2 from both parents (a highly unlikely case) >the child would not live. He never told me it was done on mice so I was >never sure how he knew. > > > > > Re: New Members & Harry Vershaw > > >> Seems to add more weight to the theories about NF2 and NF1 not always >being >> completely separate, and that maybe somebody can have NF1 and NF2?? Marie >> -----Original Message----- >> >> To: NF2_Crew <NF2_Crew > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 , did he make any mention of how this difference, on the nerve vs/ in the nerve, would be affected by radiosurgery? I have an old regrowth that may be giving me problems, and after Joanie's experience, I'm afraid I have developed cold feet, both regarding MS and LA. I think I am going to opt for gamma knife in Pgh, as you did. My biggest concern is swelling. How big was the tumor you had GK? Marie Re: NF2/NF1 >Hi Marie, > >I think you are correct that some people have both NF1 and NF2 symtoms. I >went to the ANAC general meeting not long ago. Dr. Guha (who is a bit of an >NF2 expert on this side of the boarder) gave a detailed presentation on NF2. >Unfortunately, it was not captioned but there was an interpreter there. My >ASL is not good but the sides were excellent. I believe he also thinks some >people have NF1 and NF2. He also mentioned that people who get NF2 later in >life seem to have 'milder' symtoms while early onset tends to be more >aggressive. > >He also showed an excellent picture of the NF2 tumor vs. the unilateral >tumor. The NF2 tumor tends to grow within the nerve making it much harder to >remove than the unilateral tumor which grows on the nerve and compresses it. >I have seen this in an 1984 medical article so it has been known for a long >time. However, many people I talk to think the tumors are the same. > >The last tid bit you may be interested.... In mice, if the baby where to get >the NF2 gene from both parents, it would not live. Mendelsohn told me >once if someone were to get NF2 from both parents (a highly unlikely case) >the child would not live. He never told me it was done on mice so I was >never sure how he knew. > > > > > Re: New Members & Harry Vershaw > > >> Seems to add more weight to the theories about NF2 and NF1 not always >being >> completely separate, and that maybe somebody can have NF1 and NF2?? Marie >> -----Original Message----- >> >> To: NF2_Crew <NF2_Crew > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 , did he make any mention of how this difference, on the nerve vs/ in the nerve, would be affected by radiosurgery? I have an old regrowth that may be giving me problems, and after Joanie's experience, I'm afraid I have developed cold feet, both regarding MS and LA. I think I am going to opt for gamma knife in Pgh, as you did. My biggest concern is swelling. How big was the tumor you had GK? Marie Re: NF2/NF1 >Hi Marie, > >I think you are correct that some people have both NF1 and NF2 symtoms. I >went to the ANAC general meeting not long ago. Dr. Guha (who is a bit of an >NF2 expert on this side of the boarder) gave a detailed presentation on NF2. >Unfortunately, it was not captioned but there was an interpreter there. My >ASL is not good but the sides were excellent. I believe he also thinks some >people have NF1 and NF2. He also mentioned that people who get NF2 later in >life seem to have 'milder' symtoms while early onset tends to be more >aggressive. > >He also showed an excellent picture of the NF2 tumor vs. the unilateral >tumor. The NF2 tumor tends to grow within the nerve making it much harder to >remove than the unilateral tumor which grows on the nerve and compresses it. >I have seen this in an 1984 medical article so it has been known for a long >time. However, many people I talk to think the tumors are the same. > >The last tid bit you may be interested.... In mice, if the baby where to get >the NF2 gene from both parents, it would not live. Mendelsohn told me >once if someone were to get NF2 from both parents (a highly unlikely case) >the child would not live. He never told me it was done on mice so I was >never sure how he knew. > > > > > Re: New Members & Harry Vershaw > > >> Seems to add more weight to the theories about NF2 and NF1 not always >being >> completely separate, and that maybe somebody can have NF1 and NF2?? Marie >> -----Original Message----- >> >> To: NF2_Crew <NF2_Crew > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 , did he make any mention of how this difference, on the nerve vs/ in the nerve, would be affected by radiosurgery? I have an old regrowth that may be giving me problems, and after Joanie's experience, I'm afraid I have developed cold feet, both regarding MS and LA. I think I am going to opt for gamma knife in Pgh, as you did. My biggest concern is swelling. How big was the tumor you had GK? Marie Re: NF2/NF1 >Hi Marie, > >I think you are correct that some people have both NF1 and NF2 symtoms. I >went to the ANAC general meeting not long ago. Dr. Guha (who is a bit of an >NF2 expert on this side of the boarder) gave a detailed presentation on NF2. >Unfortunately, it was not captioned but there was an interpreter there. My >ASL is not good but the sides were excellent. I believe he also thinks some >people have NF1 and NF2. He also mentioned that people who get NF2 later in >life seem to have 'milder' symtoms while early onset tends to be more >aggressive. > >He also showed an excellent picture of the NF2 tumor vs. the unilateral >tumor. The NF2 tumor tends to grow within the nerve making it much harder to >remove than the unilateral tumor which grows on the nerve and compresses it. >I have seen this in an 1984 medical article so it has been known for a long >time. However, many people I talk to think the tumors are the same. > >The last tid bit you may be interested.... In mice, if the baby where to get >the NF2 gene from both parents, it would not live. Mendelsohn told me >once if someone were to get NF2 from both parents (a highly unlikely case) >the child would not live. He never told me it was done on mice so I was >never sure how he knew. > > > > > Re: New Members & Harry Vershaw > > >> Seems to add more weight to the theories about NF2 and NF1 not always >being >> completely separate, and that maybe somebody can have NF1 and NF2?? Marie >> -----Original Message----- >> >> To: NF2_Crew <NF2_Crew > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 yeah, I bet if all you who were diagnosed in your 40's had ad mri's in your late teens there wud have been something. I was diagnosed with a spinal tumor at 14 but Im sure it was there at least 7 yrs prior, I was never a normal kid, my physical abilities were never even close to that of my peers, felt odd, now I know why! Marie Drew wrote: > I think it's agreed that early onset is usually a more severe case. Of > course, how much of early onset is due to better diagnostic abilities now, I > don't know. I think the NF2/NF1 combination is something the Crew is going > to realize before the doctors accept it. Marie > Re: NF2/NF1 > > >Hi Marie, > > > >I think you are correct that some people have both NF1 and NF2 symtoms. I > >went to the ANAC general meeting not long ago. Dr. Guha (who is a bit of an > >NF2 expert on this side of the boarder) gave a detailed presentation on > NF2. > >Unfortunately, it was not captioned but there was an interpreter there. My > >ASL is not good but the sides were excellent. I believe he also thinks some > >people have NF1 and NF2. He also mentioned that people who get NF2 later in > >life seem to have 'milder' symtoms while early onset tends to be more > >aggressive. > > > >He also showed an excellent picture of the NF2 tumor vs. the unilateral > >tumor. The NF2 tumor tends to grow within the nerve making it much harder > to > >remove than the unilateral tumor which grows on the nerve and compresses > it. > >I have seen this in an 1984 medical article so it has been known for a long > >time. However, many people I talk to think the tumors are the same. > > > >The last tid bit you may be interested.... In mice, if the baby where to > get > >the NF2 gene from both parents, it would not live. Mendelsohn told me > >once if someone were to get NF2 from both parents (a highly unlikely case) > >the child would not live. He never told me it was done on mice so I was > >never sure how he knew. > > > > > > > > > > Re: New Members & Harry Vershaw > > > > > >> Seems to add more weight to the theories about NF2 and NF1 not always > >being > >> completely separate, and that maybe somebody can have NF1 and NF2?? > Marie > >> -----Original Message----- > >> > >> To: NF2_Crew <NF2_Crew > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 yeah, I bet if all you who were diagnosed in your 40's had ad mri's in your late teens there wud have been something. I was diagnosed with a spinal tumor at 14 but Im sure it was there at least 7 yrs prior, I was never a normal kid, my physical abilities were never even close to that of my peers, felt odd, now I know why! Marie Drew wrote: > I think it's agreed that early onset is usually a more severe case. Of > course, how much of early onset is due to better diagnostic abilities now, I > don't know. I think the NF2/NF1 combination is something the Crew is going > to realize before the doctors accept it. Marie > Re: NF2/NF1 > > >Hi Marie, > > > >I think you are correct that some people have both NF1 and NF2 symtoms. I > >went to the ANAC general meeting not long ago. Dr. Guha (who is a bit of an > >NF2 expert on this side of the boarder) gave a detailed presentation on > NF2. > >Unfortunately, it was not captioned but there was an interpreter there. My > >ASL is not good but the sides were excellent. I believe he also thinks some > >people have NF1 and NF2. He also mentioned that people who get NF2 later in > >life seem to have 'milder' symtoms while early onset tends to be more > >aggressive. > > > >He also showed an excellent picture of the NF2 tumor vs. the unilateral > >tumor. The NF2 tumor tends to grow within the nerve making it much harder > to > >remove than the unilateral tumor which grows on the nerve and compresses > it. > >I have seen this in an 1984 medical article so it has been known for a long > >time. However, many people I talk to think the tumors are the same. > > > >The last tid bit you may be interested.... In mice, if the baby where to > get > >the NF2 gene from both parents, it would not live. Mendelsohn told me > >once if someone were to get NF2 from both parents (a highly unlikely case) > >the child would not live. He never told me it was done on mice so I was > >never sure how he knew. > > > > > > > > > > Re: New Members & Harry Vershaw > > > > > >> Seems to add more weight to the theories about NF2 and NF1 not always > >being > >> completely separate, and that maybe somebody can have NF1 and NF2?? > Marie > >> -----Original Message----- > >> > >> To: NF2_Crew <NF2_Crew > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 yeah, I bet if all you who were diagnosed in your 40's had ad mri's in your late teens there wud have been something. I was diagnosed with a spinal tumor at 14 but Im sure it was there at least 7 yrs prior, I was never a normal kid, my physical abilities were never even close to that of my peers, felt odd, now I know why! Marie Drew wrote: > I think it's agreed that early onset is usually a more severe case. Of > course, how much of early onset is due to better diagnostic abilities now, I > don't know. I think the NF2/NF1 combination is something the Crew is going > to realize before the doctors accept it. Marie > Re: NF2/NF1 > > >Hi Marie, > > > >I think you are correct that some people have both NF1 and NF2 symtoms. I > >went to the ANAC general meeting not long ago. Dr. Guha (who is a bit of an > >NF2 expert on this side of the boarder) gave a detailed presentation on > NF2. > >Unfortunately, it was not captioned but there was an interpreter there. My > >ASL is not good but the sides were excellent. I believe he also thinks some > >people have NF1 and NF2. He also mentioned that people who get NF2 later in > >life seem to have 'milder' symtoms while early onset tends to be more > >aggressive. > > > >He also showed an excellent picture of the NF2 tumor vs. the unilateral > >tumor. The NF2 tumor tends to grow within the nerve making it much harder > to > >remove than the unilateral tumor which grows on the nerve and compresses > it. > >I have seen this in an 1984 medical article so it has been known for a long > >time. However, many people I talk to think the tumors are the same. > > > >The last tid bit you may be interested.... In mice, if the baby where to > get > >the NF2 gene from both parents, it would not live. Mendelsohn told me > >once if someone were to get NF2 from both parents (a highly unlikely case) > >the child would not live. He never told me it was done on mice so I was > >never sure how he knew. > > > > > > > > > > Re: New Members & Harry Vershaw > > > > > >> Seems to add more weight to the theories about NF2 and NF1 not always > >being > >> completely separate, and that maybe somebody can have NF1 and NF2?? > Marie > >> -----Original Message----- > >> > >> To: NF2_Crew <NF2_Crew > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Hi, I thought I might take this opportunity to say Mike has BOTH NF#1 & NF#2 now I was going to speak up when some were talking about nf#1 and retardation but decided not to ... But Mike has deformities from nf#1 He also has hearing prob from NF#2 he is not retarded ... he is an A-B student and in college as many of you already know .This comes from my hobbies side of the family. And one brother had mental problems .one sis had cancer , mother had mental problems , 1st sister seems fine had 9 children ,Two had problems NF#2 an aneurysm burst in her head she is in a nursing home she almost died she is paraplegic now ....she graduated valvictorian ( SPELLING)in high school one daughter is school teacher one daughter works for the government ... GO FIGURE ! when it comes to NF who knows huh? The Sons own a business where they build doors for big corporations one door coast 1,000 so we learn as we go I think ... Lois Re: New Members & Harry Vershaw > > > > Seems to add more weight to the theories about NF2 and NF1 not always > being > > completely separate, and that maybe somebody can have NF1 and NF2?? Marie > > -----Original Message----- > > > > To: NF2_Crew <NF2_Crew > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 I think this just has to be a case to case subject. As we have seen on this board, nobody has exactly the same thing. Genes are funny things. They don't just come from our mom and dad....but from generations back. Who knows what someone was like 200 years ago. Carol Rigo wrote: Hi, I thought I might take this opportunity to say Mike has BOTH NF#1 & NF#2now I was going to speak up when some were talking about nf#1 andretardation but decided not to ... But Mike has deformities from nf#1 Healso has hearing prob from NF#2 he is not retarded Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Hi , says hi back and that she misses not seeing you for a while. Hopefully we'll make it to Vegas sometime soon. Take care for now, Re: New Members & Harry Vershaw > > > > > > > Seems to add more weight to the theories about NF2 and NF1 not always > > being > > > completely separate, and that maybe somebody can have NF1 and > > NF2?? Marie > > > -----Original Message----- > > > > > > To: NF2_Crew <NF2_Crew > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Hi Bro, There is another thought to look at. Schwannomatosis - this disorder has all its lumps and bumps outside of the C/nervous system... As we know NF2 is c/nerves and its location is q12 chrome22 I don't know if you know this - but Schwannomatosis is also in chrome 22. I asked Mia Mac some time ago if there was a link between the two, this is her answer.. ********** Clinically, NF2 and schwannomatosis are distinct entities. Schwannomatosis patients by definition do not have vestibular tumours. By our observations, they also do not have cataract, retinal change, meningioma, ependymoma, or much genetic risk to the next generation. Genetically, schwannomatosis is due to accumulation of somatic mutation in the NF2 gene. The germ-line alteration has not yet been cloned, but we have evidence that it is on chromosome 22, proximal to the NF2 gene. ************ Just to make it more interesting in schwannomatosis - Think of this, if the patient has been diagnosed with NF2 - biopsies would have to be taken of two - three or more tumours to confirm schwannomatosis, or NF1. - I think it might be more likely schwannomatosis plus NF2. But having said that, I also agree with those who advocate the possibility of having NF1 and NF2 - it is not impossible... as there are those out there, it's just unlikely.. .. Re: New Members & Harry Vershaw > > > > Seems to add more weight to the theories about NF2 and NF1 not always > being > > completely separate, and that maybe somebody can have NF1 and NF2?? Marie > > -----Original Message----- > > > > To: NF2_Crew <NF2_Crew > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Hi Bro, There is another thought to look at. Schwannomatosis - this disorder has all its lumps and bumps outside of the C/nervous system... As we know NF2 is c/nerves and its location is q12 chrome22 I don't know if you know this - but Schwannomatosis is also in chrome 22. I asked Mia Mac some time ago if there was a link between the two, this is her answer.. ********** Clinically, NF2 and schwannomatosis are distinct entities. Schwannomatosis patients by definition do not have vestibular tumours. By our observations, they also do not have cataract, retinal change, meningioma, ependymoma, or much genetic risk to the next generation. Genetically, schwannomatosis is due to accumulation of somatic mutation in the NF2 gene. The germ-line alteration has not yet been cloned, but we have evidence that it is on chromosome 22, proximal to the NF2 gene. ************ Just to make it more interesting in schwannomatosis - Think of this, if the patient has been diagnosed with NF2 - biopsies would have to be taken of two - three or more tumours to confirm schwannomatosis, or NF1. - I think it might be more likely schwannomatosis plus NF2. But having said that, I also agree with those who advocate the possibility of having NF1 and NF2 - it is not impossible... as there are those out there, it's just unlikely.. .. Re: New Members & Harry Vershaw > > > > Seems to add more weight to the theories about NF2 and NF1 not always > being > > completely separate, and that maybe somebody can have NF1 and NF2?? Marie > > -----Original Message----- > > > > To: NF2_Crew <NF2_Crew > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2002 Report Share Posted March 25, 2002 Haaaaaaaaaaaaaaaaaaaaa i think so Dr ~~ your golf partner Dr Lowi:) Re: NF2/NF1 > guess that means fellow crewbies shud NOT procreate! Ive seen and heard enough > to believe nf1 and nf2 most definietly does over lap no matter what dr's and > researchers contend. We should all have doctorate degrees! > > Quote Link to comment Share on other sites More sharing options...
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