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Old 04-28-2005, 03:11 PM   #1
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Join Date: Aug 2003
Location: Wisconsin, USA
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TinyTot2 HB User
Question Neurofibromatosis

My mother had neurofibromatosis many years ago (I believe she had type 1).

Anyway, my dad said I had been tested right away when the doctors discovered my mother's illness. My tests were negative. It is now 18 years later. Does anybody know if this disease is something that needs to be retested every few years?

I really can't find a lot of information about this, so I was hoping somebody knows something and can just teach me a little more about this disease so I can understand it better.


Last edited by TinyTot2; 04-28-2005 at 04:28 PM.

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Old 04-29-2005, 07:12 PM   #2
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Join Date: Oct 2004
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donttell HB User
Re: Neurofibromatosis

I have neurofibromatosis and anm 40, It can manifest it self in many different ways. HOWEVER I hear that usually around puberty is when it is diagnosised. Do you haave any cafe a lauit' (the milk and coffee looking brown spots? usually there must be five or more for any consideration.
go to [url][/url] they have a ton of information there and a great message board! If you have any questions I'd be happy to answer I'll check in

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