I have Neurofibromatosis dose any one have it?!

I have Neurofibromatosis dose any one have it?

I have Neurofibromatosis dose any one have it?
hi i am 18 and i have Neurofibromatosis. i think i have tipe 1 becuse i dont have it bad all i have is a lernig deasability, like 20 berth marks, really really smal bumps in random playses an i have had 2 tumers removd. i was wonderin if any one has Neurofibromatosis? and if so how bad or any good madicashon that helps?

I have it, and I have type one. I have had a few tumors removed. One on my right arm, when I was like 16 or 17. And then this passed Nov. I had a few removed from my spinal cord, two were crushing against it and if they weren't removed and might have woken up one day and not able to move.

I have a large mass on my right leg, that is too big too remove and it pretty painful, pain medication helps a little. I can't stand for long periods of time and sometimes one of my legs will give out, but the good thing is I haven't fallen yet. I have a good amount of those birthmark things, mostly on my legs.

So I wouldn't say I have a mild case, my doc is pretty concerned about my leg. And want to get me on test medication once it become available.

I learned I had NF type one when I was 15, I'll be 24 in a couple of weeks. I was probably fine the first couple of years after finding out and after that, it kind of all went down hill from there. I can't even enjoy swimming in our swimming pool the way I used to.
Hope that your NF, doesn't get any worse.