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I'm need some help ladies!!! neurofibromatosis

realisticdreamsrealisticdreams member
in Special Needs
I know in passing i've read a few things about NF here so I'm hoping someone can hop in and offer advice!!

I had a well visit today and before I left I asked the dr to look at this spot on my leg, I was convinced it must be some type of small cyst, but it's been there for 6-9 months.  She was like Oh I know exactly what that is, a neurofibroma, no big deal.  So I was like oh ok cool.  Then I started to think tonight, I have a couple new spots on my back that are almost white but they are raised bumps.  And i've had spots appear on my chest before (they are pinkish brown--never went away), almost overnight, I felt like I could see them grow, but they've been there since I was a teenager.  
I do not have an cafe au lait spots (but dd1 does) which is why i'm slightly freaking out.

Could I send someone who has it some pics of my 'spots'?  I have a bunch of random health issues and I have my whole life, so now i'm wondering if this could be linked, and of course I'm wondering what it would mean for the girls.  

Thanks in advance.
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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Re: I'm need some help ladies!!! neurofibromatosis

  • mmariammmmariamm member
    My DD and husband have NF. You can PM me the pics of your spots. I recognize CALs from a mile away...
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  • mmariammmmariamm member
    And how many do you have?  NF has specific criteria for a clinical diagnosis. Over six, I believe, and they have to measure above a certain criteria.
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  • realisticdreamsrealisticdreams member
    I'm not sure what all counts as a neurofibroma, I've got the one that the dr saw and then 2 on my chest that i'm pretty sure but the ones on my back (which i can't take a picture of LOL) are almost white in color but i've noticed them over the past few months.  I don't have any Cafe au lait's that I know of, but my daughter does.  And, I remember reading sometimes you can only see them with a black light.  I will PM you some pics of the others.  So I guess depending on what counts I have 5 or 6 that I know of.
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • CaptainSeriousCaptainSerious member
    mmariamm said: My DD and husband have NF. You can PM me the pics of your spots. I recognize CALs from a mile away...
    I think the OP is saying she     does not have CALs, but her son does.  Since he has NF (I'm assuming because he has CALs and a neurofibroma), OP is now wondering if her bumps are also neurobibromas.

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