----- Original Message -----

From: scott_jen_99

To: neurofibromatosis2@yahoogroups.com

Sent: Tuesday, January 01, 2008 10:07 AM

Subject: [Neurofibromatosis] Re: Questions... why is NF so hard to clearly explain, etc?

My son has the definite diagnosis of NF1 but he's never had any
xrays??? The test they do on him every year are MRI's, genetics appts,
kidney ultrasounds, and neuro visits. Should I ask about xrays?? He
walks fine and he's growing well.

--- In neurofibromatosis2@yahoogroups.com, "GENEVIEVE SEYMOUR"
<cleo5899@...> wrote:
>
> I would imagine that a genetic mutation is the way it starts in most
families........going far back in the lineage..
> ..once that mutation occurs that child can pass it on and if they
have a child with it that child will have the
> same chances with their children...............it is difficult to
deal with and as a parent I am sure it is scary.
> My father had NF1 but he had such a mild case he was never diagnosed
with it......I thing he had one cafe-au-lait
> spot and two or three fibromas..........my parents had two
children......I have NF1 but my sister does not ........
> I decided at the age of 16 that I didn't want children.....I had a
severe manifestation with the NF1.....that
> is the Pseudoarthrosis............the thinning of the long bone in
my leg.....as a fetus....a fibroma grew in
> the ankle area of my right leg.........because of this my tibia did
not form correctly........when I tried to
> walk at the age of 14 months ........my leg broke........no one knew
what was wrong with me but I was
> in shock from the pain (I am told as I don't remember that young)
they took me to the hospital and
> x-rayed my entire body and found my leg broken...........Now a days
if a child shows symptoms
> of NF1 they x-ray the bones.......if there is a problem they will
cast or brace the leg to try to avoid
> it breaking..........this condition is difficult to heal.......I
believe today the success rate is about 60%
> with several operations a year and the use of some walking
aid..........I believe in my situation....
> a miracle occurred.........when my mother found out she made a
novena (a special prayer) asking
> God only to let me accept what happened to me.........I have only
had two operations ....one at
> 14 months and another at 4 yrs and my leg healed......I wore a brace
until I was 14 and have walked
> without the aid of anything since then..............
> ----- Original Message -----
> From: scott_jen_99
> To: neurofibromatosis2@yahoogroups.com
> Sent: Monday, December 31, 2007 7:17 PM
> Subject: [Neurofibromatosis] Re: Questions... why is NF so hard to
clearly explain, etc?
>
>
> Yeah, my older two don't have it as well! It's so weird how it can
> happen that way!
>
> --- In neurofibromatosis2@yahoogroups.com, Marty Shouse <shousebl@>
> wrote:
> >
> > your story is the same as are' s, are 3 year old has nf1 and the 3
> other childern dont have it they say its a mutation as well,
> >
> > scott_jen_99 <scott_jen_99@> wrote: I was told by my
> son's neurologist that there wasn't a fetal test?? I
> > had another baby in August of this year and he so far as NO signs of
> > NF. (My son with NF1 was a genetic mutation, it is not in our family
> > anywhere that we know of).
> >
> > --- In neurofibromatosis2@yahoogroups.com, "GENEVIEVE SEYMOUR"
> > <cleo5899@> wrote:
> > >
> > > There is even a fetal test but I don't think they do it any
> > more..........
> > > ----- Original Message -----
> > > From: Tracey Samuels
> > > To: neurofibromatosis2@yahoogroups.com
> > > Sent: Monday, December 31, 2007 1:28 PM
> > > Subject: Re: [Neurofibromatosis] Re: Questions... why is NF so
> > hard to clearly explain, etc?
> > >
> > >
> > > There is a genetic test that can be done- but it works better if
> > you have a family member with NF that they can "match" your test
to.
> > >
> > > "... ..." <luckyclovergal07@> wrote:
> > >
> > > for getting diagnosed, for me anyway, my doctor was
> > > actually one who knew about it, and looked at all of
> > > the symptoms and made a match with me. i have the cafe
> > > olait spots all over my body, as well as tumors in my
> > > brain and my back. i was put in an MRI as a VERY young
> > > child to verify this.
> > >
> > > so really...i am not too sure if there is an actual
> > > test that can diagnose you or not. i think it is just
> > > a matter of getting a doctor who knows about the
> > > disorder, and having him/her check for the symptoms.
> > >
> > > though there may be a test...i just never had it
> > >
> > > good luck =)
> > > --- sunshinz25 <no_reply@yahoogroups.com> wrote:
> > >
> > > > --hi katylin,
> > > > if i understand this vorrectly your mother has it
> > > > right? so from my
> > > > understanding you have a 50% cahnce of getting it.
> > > > NF never skips a
> > > > generation so while yoou carry the gene you may not
> > > > show signs
> > > > (birthmarks,bumps) I have it ALL. i mean frckles
> > > > and knots
> > > > everywhere! But not as bad as my dad. Be careful
> > > > about doctors...
> > > > some act like they know about Nf and THEY DO
> > > > NOT!!!!!!! Please be
> > > > aware. I Find it strange when i have made trips to
> > > > the ER and the
> > > > nurse ask of past med history ,disorders etc and i
> > > > say "Nf" they are
> > > > confused "Errrrrrrrrrr whats NF?" I am like WHAT?
> > > > yOu went to med
> > > > school you you don't know? i hope things go alright
> > > > with you.- In
> > > > neurofibromatosis2@yahoogroups.com, "Katlyn
> > > > Barcroft"
> > > > <katlynandkyle@> wrote:
> > > > >
> > > > > Hi all! As I explained in my intro., my mom was
> > > > recently diagnosed
> > > > > with NF2. My doctor now wants to test me for NF
> > > > so, I have the 2-3
> > > > > hour MRI scheduled, the hearing test and optical
> > > > exam as well.
> > > > >
> > > > > My first question: Is there a test to distinctly
> > > > diagnose this
> > > > > disease or is it a constant check kinda thing?
> > > > >
> > > > > 2nd Q: My doctor recently prescribed Relafen for
> > > > me for some back,
> > > > > shoulder, neck pain I've been having along with
> > > > ultrasound therapy.
> > > > > I've never taken a prescription strength
> > > > anti-inflamatory before,
> > > > and
> > > > > I'm a little nervous about it. Also, I've never
> > > > needed physical
> > > > > therapy before, so I'm a bit nervous about it as
> > > > well. Anyone else
> > > > > take Relafen? Any experential info out there would
> > > > be great!
> > > > >
> > > > > 3rd Q: Does NF occur genetically often? I feel as
> > > > if my doctor is
> > > > > already treating me as if I do infact have it? If
> > > > this is the case,
> > > > > I'm totally fine with it. It's best to be
> > > > proactive, I think, but
> > > > > It's just a little scary for me, that's all.
> > > > >
> > > > > Just wondering if anyone has any thoughts on any
> > > > of these
> > > > > three "questions". Thanks a bunch for your time!
> > > > >
> > > > > Hope everyone is well and warm out there!
> > > > > Katlyn
> > > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > Yahoo! Groups Links
> > > >
> > > >
> > > http://groups.yahoo.com/group/neurofibromatosis2/join
> > > > (Yahoo! ID required)
> > > >
> > > >
> > > >
> > > mailto:neurofibromatosis2-fullfeatured@yahoogroups.com
> > > >
> > > >
> > > >
> > >
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