Guest guest Posted April 7, 2002 Report Share Posted April 7, 2002 You have NF2 Randy. Von Recklinghausen ( did I get the spelling right this time ? ) is the old name for what turned out to be NF1 and NF2 once technology could distinguish the difference. Von Recklinghausen was the guy that discovered the disease ( hate that word ) back in the 1800's. Marcus I have only belonged a short time but I have an important question. I have NF, no question about that. My affects my mobility a great deal but not my hearing. My body has many tumours and loads of cafe de lait spots. My tumours are concentrated in my spine and on my nerves immiting from my spine. Do I have NF1 or NF2? My doctor has not really told me although he did say I have Von Richl........ something or other besides Sorry for sounding so stupid Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2002 Report Share Posted April 7, 2002 Hi Randy, I don't know, but check out the National Neurofibromatosis Foundation website (www.nf.org). They have lots of info on NF. Their page on 'What is NF?' has sections on the diagnosis of NF1 and NF2. Maybe that will give you enough info to put yourself in one or the other category. Gillian Re:NF1 or NF2 I have only belonged a short time but I have an important question. I have NF, no question about that. My affects my mobility a great deal but not my hearing. My body has many tumours and loads of cafe de lait spots. My tumours are concentrated in my spine and on my nerves immiting from my spine. Do I have NF1 or NF2? My doctor has not really told me although he did say I have Von Richl........ something or other besides Sorry for sounding so stupid Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2002 Report Share Posted April 7, 2002 Randy Sounds like ya have 2 to me..since you have tumors inside the body. Some people can have 2 and have the cafe spots as well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2002 Report Share Posted April 7, 2002 Hi Randy, It's actually a good question, I have NF2, but I feel that I have some symptoms of NF1 as well. Including I get lots of soft-fatty fibromas that are just under the skin. They seem to be more dominant in NF1, but I got them anyways (I'm lucky that way) The hallmark of 2 of course, is the Acoustic Neuroma, if you get those then your pretty much in the club for sure. But the fact that you don't have an AN yet, could not mean much either. NF has no time schedule and you may just be lucky enough to not get a tumor there yet. In the end wether you have 1 or 2 or some Jelly Bean eating disorder, I'd say welcome to the group Pete -----Original Message-----From: Gillian Sharer Sent: Sunday, April 07, 2002 4:19 AMTo: NF2_Crew Subject: Re: Re:NF1 or NF2 Hi Randy, I don't know, but check out the National Neurofibromatosis Foundation website (www.nf.org). They have lots of info on NF. Their page on 'What is NF?' has sections on the diagnosis of NF1 and NF2. Maybe that will give you enough info to put yourself in one or the other category. Gillian Re:NF1 or NF2 I have only belonged a short time but I have an important question. I have NF, no question about that. My affects my mobility a great deal but not my hearing. My body has many tumours and loads of cafe de lait spots. My tumours are concentrated in my spine and on my nerves immiting from my spine. Do I have NF1 or NF2? My doctor has not really told me although he did say I have Von Richl........ something or other besides Sorry for sounding so stupid Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2002 Report Share Posted April 7, 2002 Another option is the NF Inc site: www.nfinc.org Marie Reply-To: NF2_Crew Date: Sun, 7 Apr 2002 04:18:56 -0400 To: <NF2_Crew > Subject: Re: Re:NF1 or NF2 Hi Randy, I don't know, but check out the National Neurofibromatosis Foundation website (www.nf.org <http://www.nf.org> ). They have lots of info on NF. Their page on 'What is NF?' has sections on the diagnosis of NF1 and NF2. Maybe that will give you enough info to put yourself in one or the other category. Gillian Re:NF1 or NF2 I have only belonged a short time but I have an important question. I have NF, no question about that. My affects my mobility a great deal but not my hearing. My body has many tumours and loads of cafe de lait spots. My tumours are concentrated in my spine and on my nerves immiting from my spine. Do I have NF1 or NF2? My doctor has not really told me although he did say I have Von Richl........ something or other besides Sorry for sounding so stupid Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2002 Report Share Posted April 7, 2002 I thought Von Reck. turned out to be a totally different disease called " Proteous Symptom " = and I know I spelled that wrong. Marie Reply-To: NF2_Crew Date: Sun, 7 Apr 2002 18:09:51 +1000 To: <NF2_Crew > Subject: Re: Re:NF1 or NF2 You have NF2 Randy. Von Recklinghausen ( did I get the spelling right this time ? ) is the old name for what turned out to be NF1 and NF2 once technology could distinguish the difference. Von Recklinghausen was the guy that discovered the disease ( hate that word ) back in the 1800's. Marcus I have only belonged a short time but I have an important question. I have NF, no question about that. My affects my mobility a great deal but not my hearing. My body has many tumours and loads of cafe de lait spots. My tumours are concentrated in my spine and on my nerves immiting from my spine. Do I have NF1 or NF2? My doctor has not really told me although he did say I have Von Richl........ something or other besides Sorry for sounding so stupid Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2002 Report Share Posted April 7, 2002 NF2 for sure. over in OZ..... Re:NF1 or NF2 I have only belonged a short time but I have an important question. I have NF, no question about that. My affects my mobility a great deal but not my hearing. My body has many tumours and loads of cafe de lait spots. My tumours are concentrated in my spine and on my nerves immiting from my spine. Do I have NF1 or NF2? My doctor has not really told me although he did say I have Von Richl........ something or other besides Sorry for sounding so stupid Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2002 Report Share Posted April 8, 2002 Marie, We all have VD. That is short for Von reck. Disease. Not long ago, people thought the person called "the elephant man" had VD too. It has now been established he did not have VD but had Proteous Syndrome instead. This is how I understand it (which may not be necessarily correct). Re: Re:NF1 or NF2 You have NF2 Randy. Von Recklinghausen ( did I get the spelling right this time ? ) is the old name for what turned out to be NF1 and NF2 once technology could distinguish the difference.Von Recklinghausen was the guy that discovered the disease ( hate that word ) back in the 1800's. Marcus I have only belonged a short time but I have an important question. I have NF, no question about that.My affects my mobility a great deal but not my hearing. My body has many tumours and loads of cafe de lait spots.My tumours are concentrated in my spine and on my nerves immiting from my spine.Do I have NF1 or NF2?My doctor has not really told me although he did say I have Von Richl........ something or other besidesSorry for sounding so stupidRandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2002 Report Share Posted April 8, 2002 I waiting for Jimmy's response to this................ Re: Re:NF1 or NF2 You have NF2 Randy. Von Recklinghausen ( did I get the spelling right this time ? ) is the old name for what turned out to be NF1 and NF2 once technology could distinguish the difference.Von Recklinghausen was the guy that discovered the disease ( hate that word ) back in the 1800's. Marcus I have only belonged a short time but I have an important question. I have NF, no question about that.My affects my mobility a great deal but not my hearing. My body has many tumours and loads of cafe de lait spots.My tumours are concentrated in my spine and on my nerves immiting from my spine.Do I have NF1 or NF2?My doctor has not really told me although he did say I have Von Richl........ something or other besidesSorry for sounding so stupidRandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2002 Report Share Posted April 9, 2002 I had to reread this whole thread:) I thought you were saying we all had Veneral Disease!! OMG, like NF is not enough AMEN to that! ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2002 Report Share Posted April 9, 2002 Don't worry Lowi, you may have VD but not the veneral type! Sorry for bringing this up but perhaps old von reck should have had a different name. Re: Re:NF1 or NF2 You know I hate to disagree, but we DON'T all have VD - in either form! LOL Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2002 Report Share Posted April 9, 2002 Ann, we are having a discussion on Von Reckinghausens disease. Would you pls. clarify Proteous syndrome/ vs Von Reck. vs. NF2 vs. NF1. Thanks, Marie Re: Re:NF1 or NF2 Don't worry Lowi, you may have VD but not the veneral type! Sorry for bringing this up but perhaps old von reck should have had a different name. Re: Re:NF1 or NF2 You know I hate to disagree, but we DON'T all have VD - in either form! LOL Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 It sounds more like nf1 because the tumors involve the spine and not the acoustic nerves. Quote Link to comment Share on other sites More sharing options...
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