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 right now she has the same nf but im to ignorant not sure if is 1 or 2 im not sure what is the different nice to meet u terry and everyone else here im from well origianl from mexico but i been here in the states for 22 years and yes i am very legal here is nice to meet other people that has the same thing as i do becasue is hard for me to have friends for the same reasopn im very shy and have 2 friends and thats it usually people dont want to get close they say is contagous yes i know is ingorance but all that hurts me because it hurst my daughter by the way i have my second daughter and she dosent have it thank god im divorce and been for 5 years from day one after i was about 3 months pregantyt from my second daughter he left and he sign his rigths from his duaghters he said he was not ready to be a father and he want it out. so i been on my own form that point on well hope i get to kow u all soon sincerely tessy sorry for my terrible spelling.
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 area removed? I'll be glad when they can find a cure/way to stop the tumors from growing back! Well, thanks for replying. I look forward to getting to know everyone better.
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...
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...
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...
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...
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...
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 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 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 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 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...
Hi Nora & Everyone! Yes, getting pain management is difficult because so many people are scamming doctors trying to get pain killers or any other prescription...
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...
hi nora ty for reply is very sad the way people is so sad, im sorry i did
not reply before my internet was down, i have a question do u know any dr
that does...
Tessy, Hi just wanted to let you know that there is a research clinic at Children's Medical Center In Dallas. Cooks in FW does as well but they do not follow...
HI IM sorry i havent respond before my interent went down anyway yes i know
\ people can be so mena and the kids even worst but the thing make me \ more up set...
hi tessy, I don't know of any doctors in texas, but if i hear anything, i'll let you know. :) good luck! sorry for the late reply, we're in the process...
OH DONT WORRY MY INTERENET WENT DOWN LAST NIGHT AND THANKS FOR TAKING U TIME
FOR REPLY GOOD LUCK IN U MOVE. WHAT IM GOING TO DO IS CHANGE DOCTORS AND SEE WHAT...
Hello, even if your doctor doesn't know much about NF, a good one will refer you to a neurologist or a specialist. Good luck. ... From: tessy merino...
... De: tessy merino Fecha: 7/28/2009 10:00:29 PM Para: neurofibromatosis2@yahoogroups.com Asunto: Re: [Neurofibromatosis] Re: hello YES i know what u mean but...
, ANDREA MERINO
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
Offline 
Send Email