Introduciton

[mandaryn]

Hi all, I'm Amanda, 24 (or will be in a week). I've had NF since I was about well... probably since I was born, but I was diagnosed when I was aobut 3 months (I think that's what my mom said, my 3-month check-up). I went through several CT scans as an infant/todler, no real reccolection of that. The thing I remember most was seeing my neurologoist

Comments

[knottyman]

well this is the place to ask questions. If no one here has the answer. WE will try to point you in the right direction.
Happy B-DAY early.
Jerry

[mandaryn]

It's not so much that I have questions, it's more that I don't even know where to begin in the gathering of information. I think I may have all that I need to know, for now. I do know that I need to be making an appontment soon with my GP so he can check out my tumors/growths; then refer me to a neurologist if necessiary. My mom has been incouraging me to get the one on my arm removed, and just about has me convinced, but I had this feeling in the back of my mind that it wouldn't be covered by insurace because it might be considered cosemetic, hopefully the fact that its grown over the last few years (more-so than just with me as it had while I was still growing myself) will help it to be considered medical.

[knottyman]

There is much more info available now then when I was diagnosed 22 yrs ago. The internet has been a great help for me to gather info and meet others.

[mandaryn]

That's pretty much how I'm looking at it. But I guess I just need mroe time to sit down and read it all. I've read the brief little descriptions and such. Amazingly there isn't much going on here in the SF Bay Area. I found a few doctors/hospitals near me, but most of them are in Southen California. I'm not too concerned with it all, I'm more just currious at the momment. When it comes time for me to have children, then I'll probably start worrying a bit more. =)

[megmeg22]

Welcome!

[hopemcg]

Welcome! There really is a lot of good info online once you start looking. I think insurance will cover the tumor being removed if it is bothering you in some way or maybe even if you are having trouble getting clothes to fit.

[mandaryn]

I guess I could lie and say it hurts. Because honestly, it dosn't bother me, the biggest complaint I have is people asking "is that from a polio vaccine" I know people used to get weird scars/bumps from that a long time ago, but not in the 80s. Oh, oh another great one, from a girl at work "did you get shot?" The whole "if you don't mind me asking, what's that on your arm" dosn't bother me that much, I just tell them it's basically a birth mark, and yes I monitor it, blah blah blah. It's acutally kind of nifty, some people seem to have genuine concern, or tell me about something they had similar (looking, I'm assuming) and that they had it removed and it was easy.

[hopemcg]

You should come up with a horrifying story to mess with people.

I have a shock of white hair in the front (I don't know if you saw X-men, but just like Rogue). People always feel like they can ask about it and even touch it. I keep trying to think of some story of how I got it -- cause there isn't really one... I'm just turning gray *shrug*

[mandaryn]

Eh, not enough time. It's usually while I'm at work, and it's the customers who are asking, and since I cashier at Costco, it's pretty fast paced. Although I try to explain the NF thing to people when I have the time.

[fifi_the_skunk]

Hello and welcome!

I can understand your confusion and we can hopefully answer your questions. I know I had lots of questions a while ago, and I have a lot of questions now that I have pain all the time in the fingers and toes (which is a very rare thing).

If you want to ask anything, I will attempt to help you out.
fifi