[Jumperswife82nd]

Hello everyone. I have been diagnosed with NF1 and am still very confused about it. I have had severe pain for 7 years now. The past 4 years has been constant, everyday, aching pain. I had a diagnoses of fibromyalgia, along with "possible MS" due to a lesion on my brain and a family history. But, then I had a lump removed in Oct. and the results came back a plexiform Intraneural neurofibroma. I am still in the process of researching it all, and waiting to get in with the neurologist. With the little bit of research I have done, I know my daughter has it as well. She's 8. I am completely crushed and heartbroken, and confused, and just plain angry with all of it. My husband is in Iraq, so I have no help, no emotional support, nothing. I am hesitant to tell him anything yet, until I know more answers ( like what's going to happen with me? Where do we go with our daughter? What's next?) Everything I have read says that my life will most likely be cut 15 years short, which is just devastating. I am completely broken, and don't even know which direction to turn right now. I hope that maybe you guys can give me some good resources and point me in the right direction. Or just give me good news about it. I mean, there has to be something good in this right? Thanks in advance for any and all help and advice.
Jennifer

[nelson312M79GG]

Hi! My name is Rick and i have nf1. I have been liveing whit it for 45 years. I was born with it but don't find out that i had till a juner in high school. One thing about this nf you don't know what chorse it going to take, so you must live life to the fullest. I use to be like that i thouth that i was going to die. So i just say that i am going to beat this. You must all so trust in GOD and let him led you because that the only way we can make it. I am cover from head to toe with bumps, some bigger than the other. I have had number of surgerys, i just had one moved from my thorth in Oct. I know thhis nf is scary news, just keep up with all the infarmation you can. So don't even think about a short life spaned. I will keep you and your family in my prayers, and that you grow strong in dealing with this. If you would like to e-mail me you can. [moderator note: e-mail address has been removed]

[NF1mamma]

I dont know what to say other than i am about the same place that you are! except i just found out that my 16 month old son has NF1. WE found out when he was 9 months me and my husband are negative for the mutated gene. it is very devastating and all we can do is wait for the path that it is gonna go. when you get the chance tell you husband he needs to know. that is why he is your husband.