NEED QUESTIONS ANSWERED

[mrkenbo]

HI, new to this but i'll try. Im a 36 y/o male I found out i had nf after my daughter was diagnosed. I always had the cafe spots. but never was diagnosed untill 5 years ago. now i have many of the neuro fibromas under my skin. mainly on my arm wrist and backbone that are about the size of a pea. some are painfull some not. what I want to know now is, I have noticed that I have many tiny bumps on my wrist, and many more onder my arm they are very tiny but i want to know if the will get larger. and will the continue to grow the rest of my life? i have had a few mris over the years and they found nothing. I guess i just want to know what to expect in the comming years for me.. do i need to see a doctor? if so when?
could someone please help me sort all this out.

[Dylans mommy]

Well my personal opinion is yes, you need to see a doctor, but then I feel everyone should have a good physical exam once a year whether you have NF or not...as far as will you bumps or tumors or whatever they are will get larger and when, nobody can answer that, unfortunately not even a doctor specialized in NF...each NF case is very different and nobody can predict the future...if I was you I would try to feel fortunate that so far this is all you have experienced and live your life to the fullest....I know it's easy to worry, believe I worry each and everyday about my 6 year old son, but I'm trying to cope the best I know how...it's all we can do.
Take care, and by the way how is your daughter doing with her NF..any problems?

[mrkenbo]

my daughter was dignosed with an optic nerve glioma. she has had 3 or 4 MRIs the doctor said that in most cases it will not get worse.
we continue to see that dr. yearly. she has the cefe spots and possibly some learning dissabilitys add?
I worry about us both But I dont know what to worry about. I dont know what to expect.
I did contact a DR. in my area that works with nf pts.
THANK YOU for your time with my questions

Ken & Alexis