Hi, my name is Meredith, and I am 24 with NF1. I have just started to
get my "bumps", and its getting a little strange when I find something
new on my body. I have a 2 yr old daughter, not sure yet if she has
NF. Well I just wanted to introduce myself, so I hope you all are
well, hope to talk to you soon!!

Meredith

Here is some info I extracted from an old medical book. This doctor
was a specialist in treating hormonal imbalances using a diathermy
machine.
--------------------------------------------------------------------
The two diseases which we have to do here, are a hypofunction, of
which tetany (Researcher's comment: Tetany - Involuntary muscle
contractions or twitching)  is the result, and a hyper-function by
which the disease of Recklinghausen may manifest itself. (Sect. 9 II
D). (Researcher's comment: Von Recklinghausen disease is now called
Neurofibromatosis)

With tetany we find a hypo-calcemia, so a decreased calcium amount in
the blood with Recklinghauses a hyper-calcaemia. Both are relatively
rare diseases.

I have examined and treated a number of patients for the disease of
Recklinghausen. We found herewith a primary hyper-function of the
thyrotropic centre. By treatment of H and G the prominent symptoms
disappeared, especially the hyper-calcemia, the de-calcification and
the attending pain in the bones.

I cannot find as adenoma with any of these patients. As is known,
repeatedly publications have appeared in which is said that these
patients suffer from an adenoma of the parathyroid glands, and it was
seen that the disease diminished after the removal of the adenoma.
This deviation is not entirely identical with the disease of
Recklinghausen. A benignant adenoma is the result of a hyper-function
of the gonadotropic centre.  In case of such an adenoma the specific
cells preserve their capacity to produce parathyroid hormone.
Therefore by the increase of the number of specific cells also the
production of the parathyroid hormone has been raised. To this fact
it must be ascribed that the symptoms of the disease decrease by the
removal of the adenoma.

On the basis of spectroscopial examination the disease of
Recklinghausen must be considered as a hyper-production of the gland
owing to the stimulation from the thyrotropic centre.

About the part of the parathyroid glands in all kinds of forms of
lithiasis, especially of renal calculus and biliary calculus, see
Chapt. 9 II D and 13 A.

Though I had not the opportunity to examine patients with tetany
spectroscopically and to treat them causually, and consequently have
no experience of this disease, it is probable that tetany is the
result of a hyper-function of the gonadotropic centre. If this
appears to be the case, then success is to be expected with short-
wave-treatments of hypophysis and thyroid gland, according to the
degree of the disease combines or not with substitutiion therapy and
eventually also with the administration of vitamin D and AT 10.

'Endogeneous Endocrinotherapy Including The Causal Cure of Cancer
Compendium'   by Jules Samuels M.D. 1947 -Holdert & Co. - Amsterdam,
Netherlands
EOF
--------------------------------------------------------------------
--- In neurofibromatosis2@yahoogroups.com, Sherrie in Florida
<Sherriebaby65@...> wrote:
>
> welcome! My name is Sherrie(41yr). I have NF1 and was diagnosed
when I was 6mo old. I have all the cafe au lait spots and several
subcutaneous bumps (they look like mosquito bites). I have an 8yr old
daughter also has NF1 and she was diagnosed at 4mo old. She has
several cafe au lait spots, and had brain surgery Sept 2006 to remove
a begnign tumor onher hypothalmus gland. We live in FL
>
> SNIP

Hi, my name is Meredith, and I am 24 with NF1. I have just started to
get my "bumps", and its getting a little strange when I find something
new on my body.  I have a 2 yr old daughter, not sure yet if she has
NF.  Well I just wanted to introduce myself, so I hope you all are
well, hope to talk to you soon!!

  Meredith

Hi. I'm Rosie, I have a 10 year old daughter with nf1. She has started
to get lot of pain in her legs and is needing an op soon. Were in the
UK, but there does not seem to be a lot of info on it here. I have
tried to call NF Assosiaction a few times but they are only open
certain times during the week??. My daughter has tumors down her leg
and a very large one on the bottom of her foot, which causes her pain,
her right leg is 3cm longer than her left. Her doctor said that the
problems she is having are rare and there is not a lot of info for them
to help her. Sorry if I'm moaning but info from the doctors is very
limited. I am not sure what help she should be getting or check ups,
any advice on this would be much appreciated. Rosie

Hello everyone, hope your all well.

Most of you from the united kingdom will know about the
Neurofibromatosis Association.

For those of you who don't there website is:-

http://www.nfauk.org

Hope this helps those of you from the UK who didn't know about it

Regards

Brian

Hello everyone,
This is my second post. I have not been here in a while. I have
NF. I have both the birthmarks and knots (tumors). It seems with
age they get WORSE. In 1999 i had 6 or more removed. They actually
did good, not that much scarring. so not very many worries. The
upcoming surgery is why i am afraid. In 2005 i noticed a small pea
size knot under my right eye just above my check bone. My biggst
fear is that the Dr will cut too deep and leave a big scar on my
face. My sister said have a plastic surgeon to go in and stich me
up (in addition to the general surgeon) performing the surgery. She
said b/c the plastic surgeon will stitch where there are not very
many scars. has anyone got one of their face removed? My sister has
one on her eye and they have yet to remove hers. I will post
pictures of my before and after surgery (only briefly) i don't like
posting pictures. I am sure you all understand. I am so nervous
b/c i know this is not a "cosmetic procedure" insurance will pay, I
am only concerned with the scars they may leave. Can anyone share
with me the technique (if any) their surgeon used to reduce scarring
on the face?
Also, i believe it was here that i read there is something you can
take (treatment) to reduce the growth of any new tumors or stunt the
growth of exisiting ones. Is this true b/c i have never heard of
this treatment. Soryy for the long post.
If anyone wants to talk drop me a line and we can. Good luck to
everyone.

Hello everyone,
This is my second post.  I have not been here in a while.  I have
NF.  I have both the birthmarks and knots (tumors).  It seems with
age they get WORSE.  In 1999 i had 6 or more removed.  They actually
did good, not that much scarring.  so not very many worries.  The
upcoming surgery is why i am afraid.  In 2005 i noticed a small pea
size knot under my right eye just above my check bone.  My biggst
fear is that the Dr will cut too deep and leave a big scar on my
face.  My sister said have a plastic surgeon to go in and stich me
up (in addition to the general surgeon) performing the surgery.  She
said b/c the plastic surgeon will stitch where there are not very
many scars. has anyone got one of their face removed?  My sister has
one on her eye and they have yet to remove hers.  I will post
pictures of my before and after surgery (only briefly) i don't like
posting pictures.  I am sure you all understand.  I am so nervous
b/c i know this is not a "cosmetic procedure"  insurance will pay, I
am only concerned with the scars they may leave.  Can anyone share
with me the technique (if any) their surgeon used to reduce scarring
on the face?
Also, i believe it was here that i read there is something you can
take (treatment) to reduce the growth of any new tumors or stunt the
growth of exisiting ones.  Is this true b/c i have never heard of
this treatment.  Soryy for the long post.
If anyone wants to talk drop me a line and we can.  Good luck to
everyone.

I had chatted with NF.org but when the went off to change to
www.ctf.org the chat room went off line and I lose touch with the room,
I don't see anyone I did before but I'm meeting new friends, if you
need a place to meet others with NF give it a try.

John

hi im taking part in a fund raiser for neurofibromatosis if you would
like to sponser me go to http://www.justgiving.com/elizabethtucker

Thanks

Hi there, sorry for not posting on here for a while, but l have been
heavily involved in several issues where l live.

Back in May 2007 l was elected onto our local council and l have since
then been involved in getting improvements to our local public
transport. I have also recently been asked if l would help with floral
enhancemets to the town which will involve negotiations with local
businesses.

I have also got engaged to my girlfried Denise so everything is
extremely busy at the moment.

Hope to chat soon

Take care

Brian

Sorry I haven't posted in a long time. I was out of work since December
and have spent a LOT of time looking for a new job. I finally got one
as a teacher aide ata Montessori preschool April 20. My daughter has
been doing really well since her first NF surgery Sept 19, 2006. She
has yearly MRI's and all are coming back perfect with not problems and
since her surgery no new tumors have grown.

I am pretty much in  "remission". Haven't dislocated him since July 2004

Sherrie

I go in about once a year to have fibromas removed by laser surgery.
It is called co2 Laser.  Have had some removed on the face this way
and it was successful with only leaving a light scar.  I do have a
couple pock marks left also those areas did not heal as well.  Laser
can be done awake or asleep where many more growths can be removed.
I am planning on seeing a plastic surgeon soon to see about having
some removed from the face before they become larger or be a
problem.  That is really the only options to have them removed...is
to see a plastic surgeon or dermatologist.  I wouldn't worry about
what people say or think.  There are so many diseases and disorders
that people have and are walking around with....and have things wrong
with their appaerance.  It is much worse in our own eyes than
others.  Next time a person makes you feel uncomfortable, explain it
to them.
>
> hello everyone i also have NF1 and all my back is full of those
things and in my neck too i have some in my face i would like to ask
if anyone knows how can i clear my face people judge me for the way i
look and that makes me up set thank you here is a little bet about me
I'm tessy single mom of 2 girls 6 and 4 we live in south TX my 6 year
old has NF1 also but she only has the brown spots thanks everyone
>
>  Tessy, Destiny, Andrea Merino
>
>
>
> ----- Original Message ----
> From: leoenwilna <leoenwilna@...>
> To: neurofibromatosis2@yahoogroups.com
> Sent: Tuesday, May 6, 2008 9:13:08 AM
> Subject: [Neurofibromatosis] Re: Debra Duncan Show - "Reggie Bibbs
& Neurofibromatosis"
>
>
> Hi José,
>
> We just saw the show and liked it very much. Wilna, my wife, also
has
> NF1 and all the sympthoms are very alike. She has about 500 growths
> only on her back.
> If my English is not correct, sorry, I'm Dutch.
>
> Leo, Arnhem, the Netherlands.
>

Hi José,

We just saw the show and liked it very much. Wilna, my wife, also has
NF1 and all the sympthoms are very alike. She has about 500 growths
only on her back.
If my English is not correct, sorry, I'm Dutch.

Leo, Arnhem, the Netherlands.

I wish that this room would be like the old days.... people would sign
in andjujst chat. sure helped when you were feeling down and did not
want to upset your family with yur thoughts. It was a good feeling to
share your thoughts feelings with others.

Why dont we set aside some late night time to chat with each other.

Sure would love to chat

I wish that this room would be like the old days....  people would sign
in andjujst chat.   sure helped when you were feeling down and did not
want to upset your family with yur thoughts.  It was a good feeling to
share your thoughts feelings with others.

Why dont we set aside some late night time to chat with each other.

Sure would love to chat

hi my name is tessy im new here im a divorce mom with 2 girls one is 6
and my baby is 4, my 6 year old and me we have neurofribromatosis and
i had learn to live with it is not been easy becasue when people see
me they judge me for the way my face is to my dauhgter u cannot tell
she has it yet anyway i joing here because i want to meet other people
with the same thiing and may be learn more about it i been divorce 3
years we live in south tx in laredo by the border of mexico well if
anyone wants to be my friend feel free to email me at
laredogirl_20006@yahoo.com hope to meet everyone here soon.
tessy merino

hi my name is tessy im new here im a divorce mom with 2 girls one is 6
and my baby is 4, my 6 year old and me we have neurofribromatosis and
i had learn to live with it is not been easy becasue when people see
me they judge me for the way my face is to my dauhgter u cannot tell
she has it yet anyway i joing here because i want to meet other people
with the same thiing and may be learn more about it i been divorce 3
years we live in south tx in laredo by the border of mexico well if
anyone wants to be my friend feel free to email me at
laredogirl_20006@yahoo.com hope to meet everyone here soon.
tessy merino

hi my name is tessy im new here im a divorce mom with 2 girls one is 6
and my baby is 4,  my 6 year old and me we have neurofribromatosis and
i had learn to live with it is not been easy becasue when people see
me they judge me for the way my face is to my dauhgter u cannot tell
she has it yet anyway i joing here because i want to meet other people
with the same thiing and may be learn more about it i been divorce 3
years we live in south tx in laredo by the border of mexico well if
anyone wants to be my friend feel free to email me at
laredogirl_20006@... hope to meet everyone here soon.
tessy merino

Ok i took the daily thing off. I don't know how it did it. My b'day is
in December!

Sherrie >
> Please take your Birthday off the Calendar!!   Anone who subscribes
to
> this thread gets it added to their calendar everyday because yoe have
> it on everyday>  It is on my personal Calendar everyday and it can
not
> be removed without unsubscribing to this Family>
>
> Thank You
>

Please take your Birthday off the Calendar!!   Anone who subscribes to
this thread gets it added to their calendar everyday because yoe have
it on everyday>  It is on my personal Calendar everyday and it can not
be removed without unsubscribing to this Family>

Thank You