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Author Topic: Cafe au lait birthmarks  (Read 5090 times)

mindyandy

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Cafe au lait birthmarks
« 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
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nancyann

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Re: Cafe au lait birthmarks
« Reply #1 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
« Last Edit: December 20, 2007, 06:22:59 am by nancyann »
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tony

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Re: Cafe au lait birthmarks
« Reply #2 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
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kristin

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Re: Cafe au lait birthmarks
« Reply #3 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...
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pimento

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Re: Cafe au lait birthmarks
« Reply #4 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.
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Kaybo

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Re: Cafe au lait birthmarks
« Reply #5 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
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Mark H

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Re: Cafe au lait birthmarks
« Reply #6 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
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mindyandy

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Re: Cafe au lait birthmarks
« Reply #7 on: May 16, 2008, 03:47:02 pm »
NF2 symptoms? What would that be?
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14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Mark H

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Re: Cafe au lait birthmarks
« Reply #8 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
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