---

To: neurofibromatosis2@yahoogroups.com
From: sassy_me_1975@...
Date: Tue, 26 Feb 2008 18:09:25 -0800
Subject: Re: [Neurofibromatosis] Re: excessive tiredness

guys hello i havent posted this but i feel i need to
they dr found a tumor in my neck between the 3rd and 4th vertebre in 2002 it never really gave me trouble till now. it is pressing on my spine and somethimes i get real bad pain from it. the neurologist i saw in the hospital  said it should be removed but has its downfalls i could be paralized by the surgery but also could be paralized if i dont have the surgery. it cant be complteley removed because of the nerve it sits on.. i am afraid and dont know what to do...
just wanted to share and get somefeed back i have the mri films on a dvd... is there any1 who can refer me to a good neurologist with nf experience who can maybe help me or do i continue to see these piss ant asses who dont know nf from a hole in their heads....

kim_mepa <no_reply@yahoogroups.com> wrote:

Have the Dr.s Check Your Thyroid . It maybe under active I have a low
active Thyroid, Can't realy say its NF related But I never have done
any research. Id have it checked anyway. Kim

---

Never miss a thing. Make Yahoo your homepage.

-------------- Original message --------------
From: k s <sassy_me_1975@...>

guys hello i havent posted this but i feel i need to
they dr found a tumor in my neck between the 3rd and 4th vertebre in 2002 it never really gave me trouble till now. it is pressing on my spine and somethimes i get real bad pain from it. the neurologist i saw in the hospital  said it should be removed but has its downfalls i could be paralized by the surgery but also could be paralized if i dont have the surgery. it cant be complteley removed because of the nerve it sits on.. i am afraid and dont know what to do...
just wanted to share and get somefeed back i have the mri films on a dvd... is there any1 who can refer me to a good neurologist with nf experience who can maybe help me or do i continue to see these piss ant asses who dont know nf from a hole in their heads....

kim_mepa <no_reply@yahoogroups.com> wrote:

Have the Dr.s Check Your Thyroid . It maybe under active I have a low
active Thyroid, Can't realy say its NF related But I never have done
any research. Id have it checked anyway. Kim

---

Never miss a thing. Make Yahoo your homepage.

Have the Dr.s Check Your Thyroid . It maybe under active I have a low
active Thyroid, Can't realy say its NF related But I never have done
any research. Id have it checked anyway. Kim

Have the Dr.s Check Your Thyroid . It maybe under active I have a low
active Thyroid, Can't realy say its NF related But I never have done
any research.  Id have it checked anyway. Kim

My daughter has been going through chemotherapy for a year for a Optic
Glioma and as of right now the tumor is a bit smaller and swelling is
down but it has come at a cost. She has lost most of the vision in that
eye. The question i have is that the eye dr called and told us that he
got some photographs back of her optic nerve and behind her bad eye the
nerve is paler than before...is there any way to correct this and the
other question she is only seeing black and white out of her bad eye
and everything right now has to be about 6 inches or closer for her to
even see its outline...will she lose even more now that the nerve is so
pale?  Hope someone can help...Nikki Benson

-------------- Original message --------------
From: "sparkiesean" <sparkiesean@...>

People with NF1 tend to be self centered...... Speak for yourself
and don't tar us all with the same brush while doing so.

I am far from being self centered - do you even know what self
centered means?

As for those who feel tired all the time, have you tried changing
your diet somewhat? Eating a bit more health? Or doing some
exercise on a daily basis? There are a number of reasons why you
feel tired - it may or may not be related to having NF.

- In neurofibromatosis2@yahoogroups.com, Jose Colombus
<josecolombus@...> wrote:
>
> Hi
>
> Your sleep deprivation might be linked to stress, anxiety. Try to
always sleep in a very cool room, do not eat meat for diner and do
not take too much stuff with cafeine, alcohol, energy drink. Drink
appropriate tea (camomille) with milk before to sleep.
> If you sleep 13 hours a nd need to sleep again it really seems that
you are depressed. Try to take some chocolate milk in the morning
but not too much because of diabetes.
> That how I handle it. I went through that too. People with NF1
have the tendency to be self centered which favour depression. So
try to be involve in a lot of social activity (volunteer, church,
club, sport, etc...). Avoid to stay alone.
>
>
>
> ---------------------------------
>
> ¿Con Mascota por primera vez? - Sé un mejor Amigo
> Entra en Yahoo! Respuestas.
>

People with NF1 tend to be self centered......  Speak for yourself
and don't tar us all with the same brush while doing so.

I am far from being self centered - do you even know what self
centered means?

As for those who feel tired all the time, have you tried changing
your diet somewhat?  Eating a bit more health?  Or doing some
exercise on a daily basis?  There are a number of reasons why you
feel tired - it may or may not be related to having NF.

- In neurofibromatosis2@yahoogroups.com, Jose Colombus
<josecolombus@...> wrote:
>
> Hi
>
> Your sleep deprivation might be linked to stress, anxiety. Try to
always sleep in a very cool room, do not eat meat for diner and do
not take too much stuff with cafeine, alcohol, energy drink. Drink
appropriate tea (camomille) with milk before to sleep.
> If you sleep 13 hours and need to sleep again it really seems that
you are depressed. Try to take some chocolate milk in the morning
but not too much because of diabetes.
> That how I handle it. I went through that too. People with NF1
have the tendency to be self centered which favour depression. So
try to be involve in a lot of social activity (volunteer, church,
club, sport, etc...). Avoid to stay alone.
>
>
>
> ---------------------------------
>
> ¿Con Mascota por primera vez? - Sé un mejor Amigo
> Entra en Yahoo! Respuestas.
>

I have been oeverly tired lately myself. Granted I do get up early but I crashed around 9 PM on the couch last night while watching TV and hubby woke me up to go up to bed. I was still wiped out.

 

 

---

From: neurofibromatosis2@yahoogroups.com [mailto:neurofibromatosis2@yahoogroups.com] On Behalf Of oosteveypoo
Sent: Saturday, February 09, 2008 3:42 PM
To: neurofibromatosis2@yahoogroups.com
Subject: [Neurofibromatosis] Re: excessive tiredness

 

--- In neurofibromatosis2@yahoogroups.com, "doughnutbabeuk"
<doughnutbabeuk@...> wrote:
>
> Does anyone else have problems with excessive tiredness i'm trying to
> work out if it's conected to the NF or something else. I've had all
the
> usuall blood tests done but nothing has been found.
>

Yes I suffer from the same, I can have a time where i will go to bed at
about 9pm and not wake up till gone 10am and also a time where i wont
goto bed until gone 1am and get up at 8am. Also i have had times where
even though i've had 13hrs sleep i could quite easily go back to bed.
I was put on a course of sleeping tablets but the doctors think it
might be linked to my depression and not the NF. They haven't done any
blood test though so as for usual ? I dont know what they are ???

Steven

--- In neurofibromatosis2@yahoogroups.com, "doughnutbabeuk"
<doughnutbabeuk@...> wrote:
>
> Does anyone else have problems with excessive tiredness i'm trying to
> work out if it's conected to the NF or something else. I've had all
the
> usuall blood tests done but nothing has been found.
>


Yes I suffer from the same, I can have a time where i will go to bed at
about 9pm and not wake up till gone 10am and also a time where i wont
goto bed until gone 1am and get up at 8am. Also i have had times where
even though i've had 13hrs sleep i could quite easily go back to bed.
I was put on a course of sleeping tablets but the doctors think it
might be linked to my depression and not the NF. They haven't done any
blood test though so as for usual ? I dont know what they are ???

Steven

Does anyone else have problems with excessive tiredness i'm trying to
work out if it's conected to the NF or something else. I've had all the
usuall blood tests done but nothing has been found.

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

From: tracey441976

To: neurofibromatosis2@yahoogroups.com

Sent: Saturday, January 05, 2008 12:31 PM

Subject: [Neurofibromatosis] Re: am i crazy or is there something wrong

Not at all Alexis and if u ever want to chat u can email me on
traceyrobertson01@btinternet.com . which is the email address I use
for the group or if u have msn/hotmail email me and I will pass on
that address and if you ever need a chat - i'll be there ....

That goes for anyone else too x

--- In neurofibromatosis2@yahoogroups.com, alexis benzinger
<truconfusion@...> wrote:
>
> thank you so much tracey for replying now i don't feel so crazy
these gp's make it seem as though everythign is in your head. i also
get chronic joint pain and have the swelling in my ankles and have
the pains in my legs as well. but they did an arthritis test and it
came back negative for me as well i have not seen a nf specialist and
do not even have a neurologist. i get treated at the va hospital and
see a gp that says im too young for all of these things to be wrong
with me. i am sorry to hear about your son i too children at this
moment it is unclear whether or not they have it my daughter is
already starting to get the freckling and spots hopefully nothing
more will happen for her and my son had i think craneosentisis
forgive my spelling. hope things get better for you and i agree that
it is worse not knowing (having a diagnosis) because you then feel
crazy i am glad to know that i am not crazy and these things are
really happening it is nice to have someone to
> talk to about all of this. thanks again for your reply.
> alexis
>
> tracey441976 <traceyrobertson01@...> wrote:
> Hi Alexis
>
> Im Tracey and I was told last year that I had NF1 it is now
realised
> that is why I broke my leg due to pseudo arthrosis when I was 15
> months old.
>
> I havent had any tests as yet but I do see a NF specialist in Feb
who
> will hopefully arrange tests for me.
>
> I have pains in my hands and arms, general tingling and numbness. I
> also get excrutiating pain in my feet and ankles that sometimes
makes
> it unbearable to stand, I have quite bad swelling around my ankle
> bone and I do have some neurofibromas at the area where the pain
is.
> also feel sometimes that if I walk quite a bit that my shin is
going
> to snap in too - that probably sounds silly but its the only way I
> can think to describe how it feels.
>
> I went to my GP who wouldnt listen when I said I was concernc the
> pains were due to the NF and insisted I had blood tests to check
for
> arthritis. These came back negative (surprise surprise)
>
> I get blinding headaches, white spots in front of my eyes and
> sometimes only way I can think to describe this is as if the eye
> socket is too small for my eye, a sort of tightness or pressure I
> guess.
>
> Like I said I broke my leg due to pseudo artrosis when I was 15
> months had numerous operations on it, pins inserted, bone grafts, I
> have scars on both legs (they took the bone for the graft on left
leg
> from my right leg) and I wore splints until I was 15 (should have
> been 21 but I got so fed up of the bullying I threw them away) I
have
> been told that if I break my left leg again there is nothing more
can
> be done and it will mean amputation. So one of the things I was
from
> the NF specialist is a referral to have both legs fitted for
splints.
>
> My little boy 3 also has NF1 and it was only after his diagnosis
that
> I was told I had it too. He however doesnt seem to have many
problems
> (touch wood) he does having learning difficulties which at the
moment
> we do not know if it is due to the NF or his Autism .... Could be
> both but we have been told it is quite severe - he cant talk except
> baby babble he only started walking at around 2 . They have said he
> is around 12 - 18 months behind what he should be. He is also still
> in nappies as he has no awareness of when he needs to go or when he
> is wet or diry ......
>
> I hope you get some definite answers soon - sometimes I think its
the
> ot having the answers that is the worst part
>
> Take care
>
> --- In neurofibromatosis2@yahoogroups.com, "truconfusion"
> <truconfusion@> wrote:
> >
> > hi my name is alexis and i was diagnosed with nf1 back in 03 for
> the
> > first time although i had symptoms a lot earlier. i have problems
> > with my hands and leg going numb it is worse on the right side if
i
> > stand too long or do too much walking i feel sick, kind of dizzy
> > start to sweat almost like im going to pass out. they have done
> > nerve conduction study tests and they came back showing there ws
a
> > delay. they of course diagnosed it as carpal tunnel and tarsal
> > tunnel. i had the ct release surgery on my left hand to see how
it
> > would go and on my right leg. however this did not fix the
problem
> > in fact it made it worse my hand is now weaker than ever and i
> still
> > deal with the numbness. i get these really bad muscle spasms and
> > sometimes i get twitching in my arm and hands. as far as the
> > numbness goes they think there might be something wrong with my
> > central nervous system but have found nothing as of yet although
i
> > don't think they are trying that hard to find the problem. is
> anyone
> > else having symptoms like this? also my night vision is horrible
> and
> > getting worse i was diagnosed with glacouma but because of my age
> > they didnt' want to start me on the meds so they said it was
border
> > line and now they say there is nothing wrong at all but i gt
these
> > little white spots sometimes that i see and i have horrible
> > migraines. one doctor thought he saw somthing on the nerve in my
> eye
> > but nothing was confirmed. had an mri where they thought i had
> > degenerative disc disease but that too is now denied it was never
> > confirmed. does anyone else go through this or is it just me. im
> > open to suggestions on what to do now or maybe new tests that can
> be
> > done.
> >
>
>
>
>
>
>
>
> ---------------------------------
> Never miss a thing. Make Yahoo your homepage.
>

Not at all Alexis and if u ever want to chat u can email me on
traceyrobertson01@... . which is the email address I use
for the group or if u have msn/hotmail email me and I will pass on
that address and if you ever need a chat - i'll be there ....

That goes for anyone else too x



--- In neurofibromatosis2@yahoogroups.com, alexis benzinger
<truconfusion@...> wrote:
>
> thank you so much tracey for replying now i don't feel so crazy
these gp's make it seem as though everythign is in your head.  i also
get chronic joint pain and have the swelling in my ankles and have
the pains in my legs as well.  but they did an arthritis test and it
came back negative for me as well i have not seen a nf specialist and
do not even have a neurologist.  i get treated at the va hospital and
see a gp that says im too young for all of these things to be wrong
with me.  i am sorry to hear about your son i too children at this
moment it is unclear whether or not they have it my daughter is
already starting to get the freckling and spots hopefully nothing
more will happen for her and my son had i think craneosentisis
forgive my spelling.  hope things get better for you and i agree that
it is worse not knowing (having a diagnosis) because you then feel
crazy i am glad to know that i am not crazy and these things are
really happening it is nice to have someone to
>  talk to about all of this.  thanks again for your reply.
>   alexis
>
> tracey441976 <traceyrobertson01@...> wrote:
>           Hi Alexis
>
> Im Tracey and I was told last year that I had NF1 it is now
realised
> that is why I broke my leg due to pseudo arthrosis when I was 15
> months old.
>
> I havent had any tests as yet but I do see a NF specialist in Feb
who
> will hopefully arrange tests for me.
>
> I have pains in my hands and arms, general tingling and numbness. I
> also get excrutiating pain in my feet and ankles that sometimes
makes
> it unbearable to stand, I have quite bad swelling around my ankle
> bone and I do have some neurofibromas at the area where the pain
is.
> also feel sometimes that if I walk quite a bit that my shin is
going
> to snap in too - that probably sounds silly but its the only way I
> can think to describe how it feels.
>
> I went to my GP who wouldnt listen when I said I was concernc the
> pains were due to the NF and insisted I had blood tests to check
for
> arthritis. These came back negative (surprise surprise)
>
> I get blinding headaches, white spots in front of my eyes and
> sometimes only way I can think to describe this is as if the eye
> socket is too small for my eye, a sort of tightness or pressure I
> guess.
>
> Like I said I broke my leg due to pseudo artrosis when I was 15
> months had numerous operations on it, pins inserted, bone grafts, I
> have scars on both legs (they took the bone for the graft on left
leg
> from my right leg) and I wore splints until I was 15 (should have
> been 21 but I got so fed up of the bullying I threw them away) I
have
> been told that if I break my left leg again there is nothing more
can
> be done and it will mean amputation. So one of the things I was
from
> the NF specialist is a referral to have both legs fitted for
splints.
>
> My little boy 3 also has NF1 and it was only after his diagnosis
that
> I was told I had it too. He however doesnt seem to have many
problems
> (touch wood) he does having learning difficulties which at the
moment
> we do not know if it is due to the NF or his Autism .... Could be
> both but we have been told it is quite severe - he cant talk except
> baby babble he only started walking at around 2 . They have said he
> is around 12 - 18 months behind what he should be. He is also still
> in nappies as he has no awareness of when he needs to go or when he
> is wet or diry ......
>
> I hope you get some definite answers soon - sometimes I think its
the
> ot having the answers that is the worst part
>
> Take care
>
> --- In neurofibromatosis2@yahoogroups.com, "truconfusion"
> <truconfusion@> wrote:
> >
> > hi my name is alexis and i was diagnosed with nf1 back in 03 for
> the
> > first time although i had symptoms a lot earlier. i have problems
> > with my hands and leg going numb it is worse on the right side if
i
> > stand too long or do too much walking i feel sick, kind of dizzy
> > start to sweat almost like im going to pass out. they have done
> > nerve conduction study tests and they came back showing there ws
a
> > delay. they of course diagnosed it as carpal tunnel and tarsal
> > tunnel. i had the ct release surgery on my left hand to see how
it
> > would go and on my right leg. however this did not fix the
problem
> > in fact it made it worse my hand is now weaker than ever and i
> still
> > deal with the numbness. i get these really bad muscle spasms and
> > sometimes i get twitching in my arm and hands. as far as the
> > numbness goes they think there might be something wrong with my
> > central nervous system but have found nothing as of yet although
i
> > don't think they are trying that hard to find the problem. is
> anyone
> > else having symptoms like this? also my night vision is horrible
> and
> > getting worse i was diagnosed with glacouma but because of my age
> > they didnt' want to start me on the meds so they said it was
border
> > line and now they say there is nothing wrong at all but i gt
these
> > little white spots sometimes that i see and i have horrible
> > migraines. one doctor thought he saw somthing on the nerve in my
> eye
> > but nothing was confirmed. had an mri where they thought i had
> > degenerative disc disease but that too is now denied it was never
> > confirmed. does anyone else go through this or is it just me. im
> > open to suggestions on what to do now or maybe new tests that can
> be
> > done.
> >
>
>
>
>
>
>
>
> ---------------------------------
> Never miss a thing.   Make Yahoo your homepage.
>

Hi Alexis

Im Tracey and I was told last year that I had NF1 it is now realised
that is why I broke my leg due to pseudo arthrosis when I was 15
months old.

I havent had any tests as yet but I do see a NF specialist in Feb who
will hopefully arrange tests for me.

I have pains in my hands and arms, general tingling and numbness. I
also get excrutiating pain in my feet and ankles that sometimes makes
it unbearable to stand, I have quite bad swelling around my ankle
bone and I do have some neurofibromas at the area where the pain is.
also feel sometimes that if I walk quite a bit that my shin is going
to snap in too - that probably sounds silly but its the only way I
can think to describe how it feels.

I went to my GP who wouldnt listen when I said I was concernc the
pains were due to the NF and insisted I had blood tests to check for
arthritis. These came back negative (surprise surprise)

I get blinding headaches, white spots in front of my eyes and
sometimes only way I can think to describe this is as if the eye
socket is too small for my eye, a sort of tightness or pressure I
guess.

Like I said I broke my leg due to pseudo artrosis when I was 15
months had numerous operations on it, pins inserted, bone grafts, I
have scars on both legs (they took the bone for the graft on left leg
from my right leg) and I wore splints until I was 15 (should have
been 21 but I got so fed up of the bullying I threw them away) I have
been told that if I break my left leg again there is nothing more can
be done and it will mean amputation. So one of the things I was from
the NF specialist is a referral to have both legs fitted for splints.

My little boy 3 also has NF1 and it was only after his diagnosis that
I was told I had it too. He however doesnt seem to have many problems
(touch wood) he does having learning difficulties which at the moment
we do not know if it is due to the NF or his Autism .... Could be
both but we have been told it is quite severe - he cant talk except
baby babble he only started walking at around 2 . They have said he
is around 12 - 18 months behind what he should be. He is also still
in nappies as he has no awareness of when he needs to go or when he
is wet or diry ......

I hope you get some definite answers soon - sometimes I think its the
ot having the answers that is the worst part

Take care

--- In neurofibromatosis2@yahoogroups.com, "truconfusion"
<truconfusion@...> wrote:
>
> hi my name is alexis and i was diagnosed with nf1 back in 03 for
the
> first time although i had symptoms a lot earlier. i have problems
> with my hands and leg going numb it is worse on the right side if i
> stand too long or do too much walking i feel sick, kind of dizzy
> start to sweat almost like im going to pass out. they have done
> nerve conduction study tests and they came back showing there ws a
> delay. they of course diagnosed it as carpal tunnel and tarsal
> tunnel. i had the ct release surgery on my left hand to see how it
> would go and on my right leg. however this did not fix the problem
> in fact it made it worse my hand is now weaker than ever and i
still
> deal with the numbness. i get these really bad muscle spasms and
> sometimes i get twitching in my arm and hands. as far as the
> numbness goes they think there might be something wrong with my
> central nervous system but have found nothing as of yet although i
> don't think they are trying that hard to find the problem. is
anyone
> else having symptoms like this? also my night vision is horrible
and
> getting worse i was diagnosed with glacouma but because of my age
> they didnt' want to start me on the meds so they said it was border
> line and now they say there is nothing wrong at all but i gt these
> little white spots sometimes that i see and i have horrible
> migraines. one doctor thought he saw somthing on the nerve in my
eye
> but nothing was confirmed. had an mri where they thought i had
> degenerative disc disease but that too is now denied it was never
> confirmed. does anyone else go through this or is it just me. im
> open to suggestions on what to do now or maybe new tests that can
be
> done.
>

Hi Alexis

Im Tracey and I was told last year that I had NF1 it is now realised
that is why I broke my leg due to pseudo arthrosis when I was 15
months old.

I havent had any tests as yet but I do see a NF specialist in Feb who
will hopefully arrange tests for me.

I have pains in my hands and arms, general tingling and numbness. I
also get excrutiating pain in my feet and ankles that sometimes makes
it unbearable to stand, I have quite bad swelling around my ankle
bone and I do have some neurofibromas at the area where the pain is.
also feel sometimes that if I walk quite a bit that my shin is going
to snap in too - that probably sounds silly but its the only way I
can think to describe how it feels.

I went to my GP who wouldnt listen when I said I was concernc the
pains were due to the NF and insisted I had blood tests to check for
arthritis. These came back negative (surprise surprise)

I get blinding headaches, white spots in front of my eyes and
sometimes only way I can think to describe this is as if the eye
socket is too small for my eye, a sort of tightness or pressure I
guess.

Like I said I broke my leg due to pseudo artrosis when I was 15
months had numerous operations on it, pins inserted, bone grafts, I
have scars on both legs (they took the bone for the graft on left leg
from my right leg) and I wore splints until I was 15 (should have
been 21 but I got so fed up of the bullying I threw them away) I have
been told that if I break my left leg again there is nothing more can
be done and it will mean amputation. So one of the things I was from
the NF specialist is a referral to have both legs fitted for splints.

My little boy 3 also has NF1 and it was only after his diagnosis that
I was told I had it too. He however doesnt seem to have many problems
(touch wood) he does having learning difficulties which at the moment
we do not know if it is due to the NF or his Autism .... Could be
both but we have been told it is quite severe - he cant talk except
baby babble he only started walking at around 2 . They have said he
is around 12 - 18 months behind what he should be. He is also still
in nappies as he has no awareness of when he needs to go or when he
is wet or diry ......

I hope you get some definite answers soon - sometimes I think its the
ot having the answers that is the worst part

Take care

--- In neurofibromatosis2@yahoogroups.com, "truconfusion"
<truconfusion@...> wrote:
>
> hi my name is alexis and i was diagnosed with nf1 back in 03 for
the
> first time although i had symptoms a lot earlier. i have problems
> with my hands and leg going numb it is worse on the right side if i
> stand too long or do too much walking i feel sick, kind of dizzy
> start to sweat almost like im going to pass out. they have done
> nerve conduction study tests and they came back showing there ws a
> delay. they of course diagnosed it as carpal tunnel and tarsal
> tunnel. i had the ct release surgery on my left hand to see how it
> would go and on my right leg. however this did not fix the problem
> in fact it made it worse my hand is now weaker than ever and i
still
> deal with the numbness. i get these really bad muscle spasms and
> sometimes i get twitching in my arm and hands. as far as the
> numbness goes they think there might be something wrong with my
> central nervous system but have found nothing as of yet although i
> don't think they are trying that hard to find the problem. is
anyone
> else having symptoms like this? also my night vision is horrible
and
> getting worse i was diagnosed with glacouma but because of my age
> they didnt' want to start me on the meds so they said it was border
> line and now they say there is nothing wrong at all but i gt these
> little white spots sometimes that i see and i have horrible
> migraines. one doctor thought he saw somthing on the nerve in my
eye
> but nothing was confirmed. had an mri where they thought i had
> degenerative disc disease but that too is now denied it was never
> confirmed. does anyone else go through this or is it just me. im
> open to suggestions on what to do now or maybe new tests that can
be
> done.
>

Hi Alexis

Im Tracey and I was told last year that I had NF1 it is now realised
that is why I broke my leg due to pseudo arthrosis when I was 15
months old.

I havent had any tests as yet but I do see a NF specialist in Feb who
will hopefully arrange tests for me.

I have pains in my hands and arms, general tingling and numbness. I
also get excrutiating pain in my feet and ankles that sometimes makes
it unbearable to stand, I have quite bad swelling around my ankle
bone and I do have some neurofibromas at the area where the pain is.
also feel sometimes that if I walk quite a bit that my shin is going
to snap in too - that probably sounds silly but its the only way I
can think to describe how it feels.

I went to my GP who wouldnt listen when I said I was concernc the
pains were due to the NF and insisted I had blood tests to check for
arthritis. These came back negative (surprise surprise)

I get blinding headaches, white spots in front of my eyes and
sometimes only way I can think to describe this is as if the eye
socket is too small for my eye, a sort of tightness or pressure I
guess.

Like I said I broke my leg due to pseudo artrosis when I was 15
months had numerous operations on it, pins inserted, bone grafts, I
have scars on both legs (they took the bone for the graft on left leg
from my right leg) and I wore splints until I was 15 (should have
been 21 but I got so fed up of the bullying I threw them away) I have
been told that if I break my left leg again there is nothing more can
be done and it will mean amputation. So one of the things I was from
the NF specialist is a referral to have both legs fitted for splints.

My little boy 3 also has NF1 and it was only after his diagnosis that
I was told I had it too. He however doesnt seem to have many problems
(touch wood) he does having learning difficulties which at the moment
we do not know if it is due to the NF or his Autism .... Could be
both but we have been told it is quite severe - he cant talk except
baby babble he only started walking at around 2 . They have said he
is around 12 - 18 months behind what he should be. He is also still
in nappies as he has no awareness of when he needs to go or when he
is wet or diry ......

I hope you get some definite answers soon - sometimes I think its the
ot having the answers that is the worst part

Take care






--- In neurofibromatosis2@yahoogroups.com, "truconfusion"
<truconfusion@...> wrote:
>
> hi my name is alexis and i was diagnosed with nf1 back in 03 for
the
> first time although i had symptoms a lot earlier.  i have problems
> with my hands and leg going numb it is worse on the right side if i
> stand too long or do too much walking i feel sick, kind of dizzy
> start to sweat almost like im going to pass out.  they have done
> nerve conduction study tests and they came back showing there ws a
> delay.  they of course diagnosed it as carpal tunnel and tarsal
> tunnel. i had the ct release surgery on my left hand to see how it
> would go and on my right leg.  however this did not fix the problem
> in fact it made it worse my hand is now weaker than ever and i
still
> deal with the numbness.  i get these really bad muscle spasms and
> sometimes i get twitching in my arm and hands.  as far as the
> numbness goes they think there might be something wrong with my
> central nervous system but have found nothing as of yet although i
> don't think they are trying that hard to find the problem.  is
anyone
> else having symptoms like this? also my night vision is horrible
and
> getting worse i was diagnosed with glacouma but because of my age
> they didnt' want to start me on the meds so they said it was border
> line and now they say there is nothing wrong at all but i gt these
> little white spots sometimes that i see and i have horrible
> migraines.  one doctor thought he saw somthing on the nerve in my
eye
> but nothing was confirmed.  had an mri where they thought i had
> degenerative disc disease but that too is now denied it was never
> confirmed.  does anyone else go through this or is it just me.  im
> open to suggestions on what to do now or maybe new tests that can
be
> done.
>

hi my name is alexis and i was diagnosed with nf1 back in 03 for the
first time although i had symptoms a lot earlier.  i have problems
with my hands and leg going numb it is worse on the right side if i
stand too long or do too much walking i feel sick, kind of dizzy
start to sweat almost like im going to pass out.  they have done
nerve conduction study tests and they came back showing there ws a
delay.  they of course diagnosed it as carpal tunnel and tarsal
tunnel. i had the ct release surgery on my left hand to see how it
would go and on my right leg.  however this did not fix the problem
in fact it made it worse my hand is now weaker than ever and i still
deal with the numbness.  i get these really bad muscle spasms and
sometimes i get twitching in my arm and hands.  as far as the
numbness goes they think there might be something wrong with my
central nervous system but have found nothing as of yet although i
don't think they are trying that hard to find the problem.  is anyone
else having symptoms like this? also my night vision is horrible and
getting worse i was diagnosed with glacouma but because of my age
they didnt' want to start me on the meds so they said it was border
line and now they say there is nothing wrong at all but i gt these
little white spots sometimes that i see and i have horrible
migraines.  one doctor thought he saw somthing on the nerve in my eye
but nothing was confirmed.  had an mri where they thought i had
degenerative disc disease but that too is now denied it was never
confirmed.  does anyone else go through this or is it just me.  im
open to suggestions on what to do now or maybe new tests that can be
done.

First off let me Thank-you for accepting my add request.
My name is Kimberly I am a 32yerar old female. I live in Indiana. I
was diagnosed at birth with NF. When I was 14 months old I had
surgery on both of my legs. First on the left to remove a congenital
tumor off of my knee. The doctors discovered that both the tibula and
fibula bones were no good. So they removed them both and then took
the fibula from my right leg and put it in my left with a harrington
rod to act as the tibula. When I was 8 i fractured my left leg and
once again had to have surgery. The doctor grafted bone from my left
hip to my left leg with some pins to hopefully fix it. Well it
worked. But when I was 11 I was diagnosed with scoliosis. It went
from a 30% angle to 70% angle inless than 6 months so I had to have
emergency surgery.
My fibromas started showing up when I was in 4th grade and I have
alot of them. They increased in number and size as the years have
gone by especially when i was pregnant. I also have tumors in my
brain and on the optic nerves of both my eyes. My right eye is worse
than my left at this moment. I also am developing slight scoliosis in
my lower spine.
I know that is a mouthfull to get out but I am happy to finally find
poeple who will know what it is I am going thru and who can share
their stories with me!!
Thank you for taking time to read this and please add me to your
messenger at yahoo!!
sassy_me_1975@...

My daughter is going through chemotherapy for an Optic Glioma on the Optic Nerve behind her right eye. She was diagnosed with NF when she was 6 months old. She was diagnosed with this tumor in February of 2006. She has lost a lot of sight in this eye. She can't see color out of this eye. They are saying that we will be done with chemotherapy around May of this year but the tumor is still there. They will continue to keep an eye on her after the chemotherapy is done. I too have NF and am going through my share of health issues due to this.  Nikki Benson

scott_jen_99 <scott_jen_99@yahoo.com> wrote:

He hasn't yet that we know of. They are monitoring it really close
though. THey said it if grows at all that we have to be sent to a
neuro surgeon to see if they want to operate or start chemo therapy.
As of the last MRI it hasn't grown.

--- In neurofibromatosis2@yahoogroups.com, Terry Long <pawpawto3@...>
wrote:
>
> I was wondering. Did your son loose his eye sight from the tumor on
the optic nerve. Back in 1961 my brother had one on the optic nerve.
He was 6 & they didn't find it untill he was blind.
>
> scott_jen_99 <scott_jen_99@...> wrote: He was just having
an MRI every 12 months, but they found a tumor on
> his optic nerve last Feb, so they are now being a lot more proactive.
>
> --- In neurofibromatosis2@yahoogroups.com, "GENEVIEVE SEYMOUR"
> <cleo5899@> wrote:
> >
> > If your son is walking fine then you don't need to have him
> > x-rayed. You would definitely be able to notice if his leg was
> bowed. In fact, sometimes at birth in the birthing room
> > the doctor may notice a bowed leg or arm.......then they would test
> for NF1......You can see without a doubt a bowed bone.
> >
> > As a child I did not have all of the testing that your son has.
> > Now at age 49 I have an MRI every 5 years to make sure
> > there are no internal fibromas. May be since he is young
> > they want to test him yearly to be on the safe side.
> > ----- 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
> > > > > >
> > > > > >
> > > > > >
> > > > >
> > > > > __________________________________________________________
> > > > > Looking for last minute shopping deals?
> > > > > Find them fast with Yahoo! Search.
> > > >
> > http://tools.search.yahoo.com/newsearch/category.php?category=shopping
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > ----------------------------------------------------------
> > > > > Looking for last minute shopping deals? Find them fast with
> Yahoo!
> > > > Search.
> > > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > ---------------------------------
> > > > Looking for last minute shopping deals? Find them fast with Yahoo!
> > > Search.
> > > >
> > >
> >
>

---

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

My daughter is going through chemotherapy for an Optic Glioma on the Optic Nerve behind her right eye. She was diagnosed with NF when she was 6 months old. She was diagnosed with this tumor in February of 2006. She has lost a lot of sight in this eye. She can't see color out of this eye. They are saying that we will be done with chemotherapy around May of this year but the tumor is still there. They will continue to keep an eye on her after the chemotherapy is done. I too have NF and am going through my share of health issues due to this.  Nikki Benson

scott_jen_99 <scott_jen_99@yahoo.com> wrote:

He hasn't yet that we know of. They are monitoring it really close
though. THey said it if grows at all that we have to be sent to a
neuro surgeon to see if they want to operate or start chemo therapy.
As of the last MRI it hasn't grown.

--- In neurofibromatosis2@yahoogroups.com, Terry Long <pawpawto3@...>
wrote:
>
> I was wondering. Did your son loose his eye sight from the tumor on
the optic nerve. Back in 1961 my brother had one on the optic nerve.
He was 6 & they didn't find it untill he was blind.
>
> scott_jen_99 <scott_jen_99@...> wrote: He was just having
an MRI every 12 months, but they found a tumor on
> his optic nerve last Feb, so they are now being a lot more proactive.
>
> --- In neurofibromatosis2@yahoogroups.com, "GENEVIEVE SEYMOUR"
> <cleo5899@> wrote:
> >
> > If your son is walking fine then you don't need to have him
> > x-rayed. You would definitely be able to notice if his leg was
> bowed. In fact, sometimes at birth in the birthing room
> > the doctor may notice a bowed leg or arm.......then they would test
> for NF1......You can see without a doubt a bowed bone.
> >
> > As a child I did not have all of the testing that your son has.
> > Now at age 49 I have an MRI every 5 years to make sure
> > there are no internal fibromas. May be since he is young
> > they want to test him yearly to be on the safe side.
> > ----- 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
> > > > > >
> > > > > >
> > > > > >
> > > > >
> > > > > __________________________________________________________
> > > > > Looking for last minute shopping deals?
> > > > > Find them fast with Yahoo! Search.
> > > >
> > http://tools.search.yahoo.com/newsearch/category.php?category=shopping
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > ----------------------------------------------------------
> > > > > Looking for last minute shopping deals? Find them fast with
> Yahoo!
> > > > Search.
> > > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > ---------------------------------
> > > > Looking for last minute shopping deals? Find them fast with Yahoo!
> > > Search.
> > > >
> > >
> >
>

---

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

He hasn't yet that we know of. They are monitoring it really close
though. THey said it if grows at all that we have to be sent to a
neuro surgeon to see if they want to operate or start chemo therapy.
As of the last MRI it hasn't grown.

--- In neurofibromatosis2@yahoogroups.com, Terry Long <pawpawto3@...>
wrote:
>
> I was wondering. Did your son loose his eye sight from the tumor on
the optic nerve. Back in 1961 my brother had one on the optic nerve.
He was 6 & they didn't find it untill he was blind.
>
> scott_jen_99 <scott_jen_99@...> wrote: He was just having
an MRI every 12 months, but they found a tumor on
> his optic nerve last Feb, so they are now being a lot more proactive.
>
> --- In neurofibromatosis2@yahoogroups.com, "GENEVIEVE SEYMOUR"
> <cleo5899@> wrote:
> >
> > If your son is walking fine then you don't need to have him
> > x-rayed. You would definitely be able to notice if his leg was
> bowed. In fact, sometimes at birth in the birthing room
> > the doctor may notice a bowed leg or arm.......then they would test
> for NF1......You can see without a doubt a bowed bone.
> >
> > As a child I did not have all of the testing that your son has.
> > Now at age 49 I have an MRI every 5 years to make sure
> > there are no internal fibromas. May be since he is young
> > they want to test him yearly to be on the safe side.
> > ----- 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
> > > > > >
> > > > > >
> > > > > >
> > > > >
> > > > > __________________________________________________________
> > > > > Looking for last minute shopping deals?
> > > > > Find them fast with Yahoo! Search.
> > > >
> > http://tools.search.yahoo.com/newsearch/category.php?category=shopping
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > ----------------------------------------------------------
> > > > > Looking for last minute shopping deals? Find them fast with
> Yahoo!
> > > > Search.
> > > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > ---------------------------------
> > > > Looking for last minute shopping deals? Find them fast with Yahoo!
> > > Search.
> > > >
> > >
> >
>

He hasn't yet that we know of.  They are monitoring it really close
though.  THey said it if grows at all that we have to be sent to a
neuro surgeon to see if they want to operate or start chemo therapy.
As of the last MRI it hasn't grown.


--- In neurofibromatosis2@yahoogroups.com, Terry Long <pawpawto3@...>
wrote:
>
> I was wondering. Did your son loose his eye sight from the tumor on
the optic nerve. Back in 1961 my brother had one on the optic nerve.
He was 6 & they didn't find it untill he was blind.
>
> scott_jen_99 <scott_jen_99@...> wrote:          He was just having
an MRI every 12 months, but they found a tumor on
> his optic nerve last Feb, so they are now being a lot more proactive.
>
> --- In neurofibromatosis2@yahoogroups.com, "GENEVIEVE SEYMOUR"
> <cleo5899@> wrote:
> >
> > If your son is walking fine then you don't need to have him
> > x-rayed. You would definitely be able to notice if his leg was
> bowed. In fact, sometimes at birth in the birthing room
> > the doctor may notice a bowed leg or arm.......then they would test
> for NF1......You can see without a doubt a bowed bone.
> >
> > As a child I did not have all of the testing that your son has.
> > Now at age 49 I have an MRI every 5 years to make sure
> > there are no internal fibromas. May be since he is young
> > they want to test him yearly to be on the safe side.
> > ----- 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
> > > > > >
> > > > > >
> > > > > >
> > > > >
> > > > > __________________________________________________________
> > > > > Looking for last minute shopping deals?
> > > > > Find them fast with Yahoo! Search.
> > > >
> > http://tools.search.yahoo.com/newsearch/category.php?category=shopping
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > ----------------------------------------------------------
> > > > > Looking for last minute shopping deals? Find them fast with
> Yahoo!
> > > > Search.
> > > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > ---------------------------------
> > > > Looking for last minute shopping deals? Find them fast with Yahoo!
> > > Search.
> > > >
> > >
> >
>

He was just having an MRI every 12 months, but they found a tumor on
his optic nerve last Feb, so they are now being a lot more proactive.

--- In neurofibromatosis2@yahoogroups.com, "GENEVIEVE SEYMOUR"
<cleo5899@...> wrote:
>
> If your son is walking fine then you don't need to have him
> x-rayed. You would definitely be able to notice if his leg was
bowed. In fact, sometimes at birth in the birthing room
> the doctor may notice a bowed leg or arm.......then they would test
for NF1......You can see without a doubt a bowed bone.
>
> As a child I did not have all of the testing that your son has.
> Now at age 49 I have an MRI every 5 years to make sure
> there are no internal fibromas. May be since he is young
> they want to test him yearly to be on the safe side.
> ----- 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
> > > > >
> > > > >
> > > > >
> > > >
> > > > __________________________________________________________
> > > > Looking for last minute shopping deals?
> > > > Find them fast with Yahoo! Search.
> > >
> http://tools.search.yahoo.com/newsearch/category.php?category=shopping
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > ----------------------------------------------------------
> > > > Looking for last minute shopping deals? Find them fast with
Yahoo!
> > > Search.
> > > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > ---------------------------------
> > > Looking for last minute shopping deals? Find them fast with Yahoo!
> > Search.
> > >
> >
>

He was just having an MRI every 12 months, but they found a tumor on
his optic nerve last Feb, so they are now being a lot more proactive.

--- In neurofibromatosis2@yahoogroups.com, "GENEVIEVE SEYMOUR"
<cleo5899@...> wrote:
>
> If your son is walking fine then you don't need to have him
> x-rayed. You would definitely be able to notice if his leg was
bowed. In fact, sometimes at birth in the birthing room
> the doctor may notice a bowed leg or arm.......then they would test
for NF1......You can see without a doubt a bowed bone.
>
> As a child I did not have all of the testing that your son has.
> Now at age 49 I have an MRI every 5 years to make sure
> there are no internal fibromas. May be since he is young
> they want to test him yearly to be on the safe side.
>   ----- 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
>   > > > >
>   > > > >
>   > > > >
>   > > >
>   > > > __________________________________________________________
>   > > > Looking for last minute shopping deals?
>   > > > Find them fast with Yahoo! Search.
>   > >
>   http://tools.search.yahoo.com/newsearch/category.php?category=shopping
>   > > >
>   > > >
>   > > >
>   > > >
>   > > >
>   > > >
>   > > >
>   > > ----------------------------------------------------------
>   > > > Looking for last minute shopping deals? Find them fast with
Yahoo!
>   > > Search.
>   > > >
>   > >
>   > >
>   > >
>   > >
>   > >
>   > >
>   > > ---------------------------------
>   > > Looking for last minute shopping deals? Find them fast with Yahoo!
>   > Search.
>   > >
>   >
>

----- 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
> > > >
> > > >
> > > >
> > >
> > > __________________________________________________________
> > > Looking for last minute shopping deals?
> > > Find them fast with Yahoo! Search.
> >
http://tools.search.yahoo.com/newsearch/category.php?category=shopping
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > ----------------------------------------------------------
> > > Looking for last minute shopping deals? Find them fast with Yahoo!
> > Search.
> > >
> >
> >
> >
> >
> >
> >
> > ---------------------------------
> > Looking for last minute shopping deals? Find them fast with Yahoo!
> Search.
> >
>

----- 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
> > > >
> > > >
> > > >
> > >
> > > __________________________________________________________
> > > Looking for last minute shopping deals?
> > > Find them fast with Yahoo! Search.
> >
http://tools.search.yahoo.com/newsearch/category.php?category=shopping
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > ----------------------------------------------------------
> > > Looking for last minute shopping deals? Find them fast with Yahoo!
> > Search.
> > >
> >
> >
> >
> >
> >
> >
> > ---------------------------------
> > Looking for last minute shopping deals? Find them fast with Yahoo!
> Search.
> >
>