ANA Discussion Forum

General Category => Inquiries => Topic started by: mindyandy on December 19, 2007, 10:41:35 pm

Title: Cafe au lait birthmarks
Post by: mindyandy on December 19, 2007, 10:41:35 pm

I have cafe au lait birthmarks. Just wondering who else does. Please chime in if you do. If you do are you a Nf2'er? I'm just curious.
Thank you
Mindy

Title: Re: Cafe au lait birthmarks
Post by: nancyann on December 20, 2007, 05:59:11 am

I have a large one over my right shoulder blade.  Actually, it's a port wine stain.  (not an Nf2'er).    Let's see who else chimes in!   Nancy

Title: Re: Cafe au lait birthmarks
Post by: tony on December 20, 2007, 10:59:29 am

I am so reluctant to chime in on these
Basically the birthmarks are often a clue
- if you have say 20+ on the midriff area (I do)
and evidence of an AN - then NF2 might be suspected
But equally a few moles etc does not mean that anyone
is NF2 - without a test result to confirm
and many NF2s actually have no marks at all
(while a very few have skin lumps as well)
Its the variables that do make it a bit complex ?
Best Regards
Tony

Title: Re: Cafe au lait birthmarks
Post by: kristin on December 20, 2007, 01:24:03 pm

I'm not exactly sure what a cafe au lait birthmark is, but I have 2 decent sized brown circular birthmarks. One on my hip and the other on the inside of my leg. I have not heard of this being a sign of AN's before...

Title: Re: Cafe au lait birthmarks
Post by: pimento on January 29, 2008, 09:17:02 pm

I have one on my right thigh very small. However both of my siblings have larger ones but no AN; big brother has one on his chin and younger brother has one at the small of his back. Theirs are quite a bit larger and more noticable than mine.

Title: Re: Cafe au lait birthmarks
Post by: Kaybo on February 09, 2008, 10:24:19 pm

i don't know what a cafe au lait is either but my daughter has a "chocolate chip cookie" on her back -- that is what the dermo. said.  anybody heard of that?
K

Title: Re: Cafe au lait birthmarks
Post by: Mark H on February 29, 2008, 10:02:47 am

I've got several CAL's. I'm also definite NF1, and diagnosed with bilateral AN's a couple years ago. I've seen a few doctors on the AN's and right now about half say they are AN's and half say no. Whatever they are they are real small, about 2MM on the last couple MRI's and not changing any. I do have most of the NF2 symptoms, so that's still up in the air which is fine with me as long as whatever is in my head stays small. I really don't sweat  things "till I have to.   ;D
Mark

Title: Re: Cafe au lait birthmarks
Post by: mindyandy on May 16, 2008, 03:47:02 pm

NF2 symptoms? What would that be?

Title: Re: Cafe au lait birthmarks
Post by: Mark H on May 18, 2008, 08:58:23 am

NF2 symptoms are kinda like those for a single AN. I have the  tinitus (both ears), not great balance, some dizziness. I did have a cataract removed when I was 49, which is a bit on the young side for those and another NF symptom but I think most NF2 folks who have them get them younger than that. Since a couple doc's are sayin the AN diagnosis is wrong I'd be just as happy to stick with having NF1.
Mark