Hi, new member here. I'm a 30 y/o with NF. My dad has NF as well. Most of my tumors are on my spine, although I do have external ones as well. I live in an...
Hi Nora  My father had NF, I have NF, my son "Paul 30 years old" has NF. Thank God my new granddaughter does not NF. I had a groth on my small intestine,...
Hi Terry, Nice to meet you. That's good that your granddaughter doesn't have NF. :) Have you had any problems with tumors in the intestine since you had that...
hello everyone im tessy i have nf but not sure if is 1 or 2 anyway nobody in
my family has it im the only one and when i got pregnat my first daughetr
shes 7...
So far I haven't. I beleve that whatever comes my way, God will get me through it. So I don't worry about what might happen. Terry ... From: littlenloud78...
Hi neurofibromatosis2@yahoogroups.com, I set up a Facebook profile where I can post my pictures, videos and events and I want to add you as a friend so you can...
Tess, welcome to the group. I am not certain which one I have or if I have both. I think it's NF1. One of them effects sight and hearing and that's not...
Nice to meet you, Kristy and Tess -- I'm also not sure if i have NF1 or NF2; it seems that I have more symptoms related to NF2, but my Dad had NF1. The...
thought id say hi everyone. i havent had much luck in the past with online chats etc. re: nf. even tried starting a my space "community" to see if id find...
Hi Nora and all, I think we are always going to run into some people that are really rude, but not everyone is like that. Some people I have found are just...
hello everyone, I get most of looks from small children because of my right eye being close more because I am miss the bone behind it, once in a while I get a...
Hi John, How does the Gabapentin work for you? I don't have insurance, so don't take anything stronger than Ibuprofin, which you know... takes the edge off,...
hi crysti i agree with u i hate when people are rude to me they wotn even
let their kids play with my kdis i have NF1 is not to sever but i had some
of the...
mean parents...mean kids...i do not mean or wish that but any one can have a scars/bumps on face...by birth or by accident so if GOD forbidden some thing...
Hi Nora, Gabapentin is not cheap a 800 mg is about $3.80 each, it is not like ibuprofin you don't just take it when needed have to take it 3x per day at the...
hi john, thanks. i'm familiar with what Gabapentin does, since I'm a nurse, but just wondered, since it is so expensive, if you liked how it worked for you. I...
Hi Tessy, Yeah, I can give you the name of the book. I have to go find it. It's called "Lisa H" The True story of an extraordinary and Courageous Woman, by ...
Hello Everyone! I'm Becky (Rebecca)from North Carolina, I don't always get a chance to read all of the postings for our group, but I try to reply to any that I...
hi Becky, It has definitely been frustrating trying to get treatment. While my neurologists are knowledgeable enough about the condition to realize that...
some one told me Acupuncutre (a chinese way of treating people) is good...i am not aware as how much authentic it is but net can be searched for this...
thanks, I'd like to try that sometime -- however, just a word of caution, make sure the place you do it uses sterile technique with the accupuncture...
well it was gathering some where and some one told me (i don't exactly remember who he was) that his wife had used this during their baby's birth for pain...
Isn't that related to dyslexia? I do not know how to spell it. I have dyslexia and so does my sister. I do not think my mom does. My dad also has it, but...
What is cyberknife surgery?? ~Kristy~ Note: This is my signature. Please check out my book review blog http://flowerlillacs1.blogspot.com/ Yahoo messenger: ...
My mom was told she had both, but her hearing is fine, but she has to wear glasses, but she is not blind and can drive fine. I don't know that NF2 always...
My mom thinks that having them removed causes more or could cause more, however, if it's done with laser surgery than they may never come back. There was a...
It could be both. My son & I both have trouble spelling & both have NF. Paul also is dyslexia. I don't thank that I have dyslexia. Terry ... From: Kristy...
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