Guest guest Posted November 9, 1999 Report Share Posted November 9, 1999 Hi everyone, I have a doctor who responded to my question of did he have any knowledge of the disease NF2 with what I thought was likely a lie. He said " I,ve heard of NF5 and proceeded to spend 10 minutes of my appointment telling me that he got his info from Mayo when he was there for further training. " He was not joking. When I asked him any questions about this disease he did usual doctor performance of talking louder when I started to talk and over-riding me and my questions by talking about what he decided to talk about, which was nothing to do with my appointment. A women from Regina says she was told by a Calgary ENT that her son has type 3, not 1 or 2. A 'new type' . Has anyone else heard of these and is it in fact true that Mayo has said there is now a Type 5? I think he was pulling my leg. But I'm no Doctor, and what of the NF3?? I am open to any comments/opinions on these. Sheryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 1999 Report Share Posted November 9, 1999 Sheryn, Some physicians believe there are 5 types of NF. If I remember right, Type 3 is combination of NF1 and NF2. Type 5 is a cafe-o-lait (spelling?) spot. There is also a mosaic form of NF which does not express in the carrier. But may pass on to the next generation. curious and confused????? Hi everyone, I have a doctor who responded to my question of did he have any knowledge of the disease NF2 with what I thought was likely a lie. He said " I,ve heard of NF5 and proceeded to spend 10 minutes of my appointment telling me that he got his info from Mayo when he was there for further training. " He was not joking. When I asked him any questions about this disease he did usual doctor performance of talking louder when I started to talk and over-riding me and my questions by talking about what he decided to talk about, which was nothing to do with my appointment. A women from Regina says she was told by a Calgary ENT that her son has type 3, not 1 or 2. A 'new type' . Has anyone else heard of these and is it in fact true that Mayo has said there is now a Type 5? I think he was pulling my leg. But I'm no Doctor, and what of the NF3?? I am open to any comments/opinions on these. Sheryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 1999 Report Share Posted November 10, 1999 I'm a reacurring member of the crew..I hope in and out LOL I asked my NF2 Specialist at Pittsburgh Children's Hospital Dr Albrighta bout the NF3 Nf5 etc. he told me that there was no such thing....... I don't know. Maybe they are just saying that if you have NF2 tumors in this region and that it's NF3? Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 1999 Report Share Posted November 10, 1999 Sheryn, Yes it is true that there are other types of NF. Traditionally speaking we have NF1 and NF2 (which you already know about). Then there are several variations of NF2. I think I recall that there are 4 but I will have to look it up again. I came across this reading in my research when I was first trying to find out what this disorder was. From what I gathered it seems that they classify NF2 into different types (I think this is for the new mutations only). How they are classified is based upon the severity of the disorder. Again, I will need to double check on this info for you. To give an example, when I had cancer they said there was about 4 different variations also. Some of the cancers only affected people over the age of 65-70. This was a more serious form and chances of a cure were unlikely. Then there was a form that affected only very young children. I was in the group who were affected in their early 20's (which ususally were male patients - but I was one of those exceptions). I think this is kind of how it works for the NF2 also. This is different from what is called " staging " of a disease but it does correlate with it too. I don't know if I made any sense to you just now. I was not too concerned about it at the time because pretty much you have the same treatments as anyone else. It may affect how the tumors respond but you have the same options. I also think I remember that these other forms result in a false negative on the NF2 genetic blood test (thus that is how they were found). I will try to find the info again and get it to you. - Beck P.S. - I have noticed similiar hesitation among certain doctors also. Most often (in my opinion) it is lack of knowledge about the disorder. A couple have admited it to me and yes it is very frustrating. Just keep plugging your way on your own research (it helps to make an organized binder/notebook) and be very assertive in telling people what you want so that you get to the doctors who CAN help you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 1999 Report Share Posted November 10, 1999 , can I ask you where you got that information? Very interesting. marie curious and confused????? Hi everyone, I have a doctor who responded to my question of did he have any knowledge of the disease NF2 with what I thought was likely a lie. He said " I,ve heard of NF5 and proceeded to spend 10 minutes of my appointment telling me that he got his info from Mayo when he was there for further training. " He was not joking. When I asked him any questions about this disease he did usual doctor performance of talking louder when I started to talk and over-riding me and my questions by talking about what he decided to talk about, which was nothing to do with my appointment. A women from Regina says she was told by a Calgary ENT that her son has type 3, not 1 or 2. A 'new type' . Has anyone else heard of these and is it in fact true that Mayo has said there is now a Type 5? I think he was pulling my leg. But I'm no Doctor, and what of the NF3?? I am open to any comments/opinions on these. Sheryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 1999 Report Share Posted November 12, 1999 Marie, You may find that in: Neurofibromatosis : Phenotype, Natural History, and Pathogenesis -- M. Riccardi curious and confused????? Hi everyone, I have a doctor who responded to my question of did he have any knowledge of the disease NF2 with what I thought was likely a lie. He said " I,ve heard of NF5 and proceeded to spend 10 minutes of my appointment telling me that he got his info from Mayo when he was there for further training. " He was not joking. When I asked him any questions about this disease he did usual doctor performance of talking louder when I started to talk and over-riding me and my questions by talking about what he decided to talk about, which was nothing to do with my appointment. A women from Regina says she was told by a Calgary ENT that her son has type 3, not 1 or 2. A 'new type' . Has anyone else heard of these and is it in fact true that Mayo has said there is now a Type 5? I think he was pulling my leg. But I'm no Doctor, and what of the NF3?? I am open to any comments/opinions on these. Sheryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 1999 Report Share Posted November 12, 1999 , I was at an nf meeting the other night, and in telling them NF2 happens in young people also, I was describing your daughter; someone asked me if she had bilateral ANs, and I did not think so; then they said, then how did they know she has NF2? Then I thought maybe I was wrong. Which is correct? marie curious and confused????? Hi everyone, I have a doctor who responded to my question of did he have any knowledge of the disease NF2 with what I thought was likely a lie. He said " I,ve heard of NF5 and proceeded to spend 10 minutes of my appointment telling me that he got his info from Mayo when he was there for further training. " He was not joking. When I asked him any questions about this disease he did usual doctor performance of talking louder when I started to talk and over-riding me and my questions by talking about what he decided to talk about, which was nothing to do with my appointment. A women from Regina says she was told by a Calgary ENT that her son has type 3, not 1 or 2. A 'new type' . Has anyone else heard of these and is it in fact true that Mayo has said there is now a Type 5? I think he was pulling my leg. But I'm no Doctor, and what of the NF3?? I am open to any comments/opinions on these. Sheryn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 1999 Report Share Posted November 13, 1999 Marie. My son is 13 and he has bilateral AN's. He was diagnosed at 5 years old and they thought he had NF1. I have since found out that a person that has NF2(me) cannot have a child with NF1. Hope that helps! Donna from Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 1999 Report Share Posted November 13, 1999 Donna, that's not entirely true .... just like some of us are first generation NF2, it would be possible for your son to be first generation NF1. In this way, he could have both NF1 and NF2 ... it's rare, but not unheard of. > they thought he had NF1. I have since found out that a person that has > NF2(me) cannot have a child with NF1. > > Hope that helps! > Donna from Texas > ------------------------------------------------------------------------ > 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 November 13, 1999 Report Share Posted November 13, 1999 Why did they think he had NF1? Was it not until he developed the bi-lateral ANs that they realized he had NF2? Seems like not a very bright Dr. who would see a Mom with NF2 and think the son had NF1?? marie Re: curious and confused????? >From: DonnaHut@... > >Marie. > >My son is 13 and he has bilateral AN's. He was diagnosed at 5 years old and >they thought he had NF1. I have since found out that a person that has >NF2(me) cannot have a child with NF1. > >Hope that helps! >Donna from Texas >------------------------------------------------------------------------ >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...
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