Neurofibromatosis

[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]