Neurofibromatosis

[TracyMichele]

Hello,
I am Tracy, a 41 year old female whom has nf and has 2 sons one 13 and one 2,only the 13 year has been diagnosed so far with nf. He doesn't seem to be having any trouble at this time, me on the other hand is dealing with quite a bit of pain. I also have quite a few grows on the surface of my skin and a growth on my face that has been operated on twice, but is still here. I haven't been able to work in 3 years, I am no able to get to doctors, because I have been uninsured as well as doctors here don't really show me thwy have the knowledge for this disease. I don't know of anyone personally with this disease, not even in my family. So no one can relate to me, other than they understand my pain. I would to like to be able to connect with someone who can relate to me that understands this disease, there are no support groups here in this part of Georgia. I am truly trying to put in my mind I am going to be okay, and I guess I am, but then to I also worry. Just looking for some support from others like me. Bless each of you!

[karmcn38]

I completely understand how you feel. No one that I know of has NF in my family either. I have bumps on the inside and outside of my skin. And they hurt bad when touched. It feels like nerves running all through that area of the body. I have them from head to toe. I also have severe back pain and I have been wondering if the NF is the cause of it. I have not been doing so great at work either. I can't seem to get my work done in a timely manner because I cannot concentrate becasue of the pain. I have a 3 yr old boy and I am praying that he does not inherit this. Please feel free to e-mail me at [moderator note: e-mail address has been removed] if you want to. It feels good to know that someone else out there can relate to you.

Thanks,

Karen

[nelson312M79GG]

Hi! Tracy
I am a 44 year old male and i have nf1. I stared haveing bumps show on me when i was in high school. the doctor did't know what it was.Until seven year ago really found out what i had.I have had three surgery.I had a neurofibromas removed from leg in 2002,and in 05 my neck and in 06 my eye lid.now oct.11 i going to have one remove from my mouth.my body is covered from head to toe with bumps now.I am bless to still be able to work.i work at a high school the same place that i graduade.Some of the kids look at me funny but i try on.but some it get hard to go out in public.I still have 4 large tumer need to be removed.I have insurance but i don't know how they will cover me.I do see doctor that deal with this in Birmingham, Al. I am in Huntsville,Al. I will you in my prayers becouse i do know what you are going thourth.and i ask that you pray for me.I was bless to get marred Dec 11,03,i don' have any kids and i will pray for your kids also.if you would like to contact me you can at [moderator note: e-mail address has been removed]
Rick

[ekimzus]

Hello Tracy

I am 45 years old, and have been being tested for NF issues for the past year. I have NF 1, which has been confirmed by MRIs of my low, middle, and upper back. My brain MRI is clear, but it did show a fibroma on my scalp (bump on my head).

My Neurologist has me taking Zanaflex for nerve pain; which works only a little, but plunders me into being tired. She tests me each appointment, and I am unable to walk a toe to toe straight line even 2 steps. I cannot touch my nose with my eyes closed, and cannot stand on one foot.

I have only a half dozen fibromas (bumps on the skin), which at least makes my condition one that others cannot see. I do have nerve root tumors on nearly all nerves in my back, which cause a number of low to moderate painful areas.

Please feel free to email me anytime. I have one of the best informational books published in reference to NF, and some very nice people have provided me with medical contacts, out of my area, but still will provide support and answer questions.

Hope to hear from you,

Mike

[nelson312M79GG]

Hello Mike
My name is Rick and i have nf1, i have had it for a long time. I am also 45 years old. I know it was hard to take in something like this. you just have to trust in God, He will make away for you. I am covered from head to toe. I don't have any on my face yet but everywhere else. It was so hard to go out whit shorts on and my arm uncovered,but thanks be to God, i go and don't care what people thanks. I will keep you in my prayers that God help you with this nf. you may e-mail me if you like at [moderator note: e-mail address has been removed]

[Ginah]

Hi Tracy, I'm Ginah and I have NF and 14 year old daughter was diagnosed with NF when she was just born because of the 6 cafe-aulaits on her body. I'm 43--my NF progresses when I got pregnant and since I got pregnant twice, the bumps on my body increases in numbers and yes this made me very angry and mad because it ruined my appearance and health. I have pains and aches all over and have been operated twice, 1988 & 1998..yes, the tumor grew/came back so the neurosurgeon operated me once again and hopefully it never grew back because this year will the next 10 years. I can't afford to have another major surgery. Because of my kids, daughter 14 and son 12--my son don't have it..If you must know I have the bumps all over my body, big and small, hard and soft even inside that's why I have pains and aches all the time but I am used to it. I don't take no medications because the doctors I've seen said there's no medicines for it. I can't work---there's no strenght on my fingers and hands. I get SSI. and so I am on medical. Having medical is not that good either because it hard to make appointments etc. Some doctors and their employees are somewhat mean, I quessed because of the NF. People of all ages are also mean---they look, stares, whisper, laugh and make fun..I have experienced that for sometime but it ended--I quessed because I don't bother to look at them or back and just don't let it get to me. Some people are very nice as well especially at my kids elementary school where I used to volunteer and help out with whatever. My kids are now 14 and 12 and so I decided to stay home and do a research about NF. I worry because my daughter is been complaining with this and that---headaches, pain in the eyes, feet, and stomach. Her cafe-aulaits increases in number as well--so far she don't have no bumps. But the birthmark she have on her arm which happen to be her favorite cafe-aulaits raised up and became bigger--it used to look like the map of CA she said, now she don't like it because it raised up and became bumpy and lumpy. Doctors don't want to do anything to it- they said it's too complicated--but like I said because we just have medical, I think that's the reason. I also noticed that everytime they do/run a test associated with xrays machine--more and more bumps pop out like magic. Like 2 months ago--something just pop out in my throat. I am getting it taken care of and waiting for CT scan for it. I don't know if this have help you understand NF--I don't really know that much of it. I was told I have NF and just me and my daughter has it. Hope you read this and hope you will like to response by wanting to get to know me and so we can talk and be friends..Goodluck!