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, had to have 12 inches of small inteatine removed. I have more grothes on my skin then one can count. So far all that we know about my son only has them external. I had a brother who had one on his optic nerve at age 6 "1961". The doctors only gave him 6 years, but he 12 years.
Terry
--- On Wed, 7/8/09, littlenloud78 <littlenloud78@...> wrote:
From: littlenloud78 <littlenloud78@...> Subject: [Neurofibromatosis] hello To: neurofibromatosis2@yahoogroups.com Date: Wednesday, July 8, 2009, 1:37 PM
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 area where the doctors really don't know so much about NF -- I think that's a frustration for many of us with NF. I have had some of the significant tumors on my spine removed, when they were causing nerve damage; problem is, removing them will cause nerve damage as well, so its basically been decided to not remove them until they get really bad. Does anyone have alot of chronic pain associated with NF tumors? Do you have any successful ideas on how to treat w/o meds?
I'm also a mom to two beautiful little boys who are both healthy so far, although my oldest does have several cafe-au-lait spots, but that's all.
Well, hope to get to know all of you. Will be nice to meet other people with the same condition and be able to share similar concerns/problems and have ppl know what I'm
talking about.
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...
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...
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