Sign Up Today!

VIKKI · 03-23-2002, 02:08 PM

I have just find out i have neurofibromatitis. Im 52.

------------------
vikki

Glenda57 · 03-31-2002, 05:39 PM

Vikki , I have Neurofibromatosis.

You need to been seen at an NF Clinic to get an accurate diagnosis.
Where do you live and I can find you an NF clinic ?

Do you have tumors on your skin ?
Do you have brown cafe aulait birthmarks ?

VIKKI · 04-01-2002, 10:01 AM

Hi, i just has a mole that has it in it. There did a mri of my brain to see if it is there. I live in alamogordo,nm vikki

------------------
vikki

Glenda57 · 04-01-2002, 03:58 PM

Vikki , you really need to be seen by a NF clinic & Genetics doctor.

There really isn't such a thing as just a Mole with Neurofibromatosis in it Vikki.

You are Born with Neurofibromatosis !

Signs and symptoms are : Brown cafe aulait birthmarks,
tumors on your skin , pigmentation in your eye's is a possible sign for some folks with NF. That is called a Lischi Nodule.
Symptoms range from pain to numbness , and headaches are envolved with some with this genetic disorder.
This comes from a flaw in the number # 17 chromosone in our genetic make up.

Contact the NF org and they can assit you with locating some one to help you.

MRI's are very helpfull for looking for brain tumors.
Spinal MRI's look for tumors any where in there by the spinal cord , also looks for Leaking spinal fluid called Dural Ectasia.
<p>[This message has been edited by moderator2 (edited 04-01-2002).]

VIKKI · 04-01-2002, 06:50 PM

When the pathology report came back it said neurofibroma

Glenda57 · 04-02-2002, 03:27 PM

Hi Vikki , then what you had must have been an actual Neurofibroma then , not a mole , unless the tumor was under a small brown cafe aulait birthmark.
I have tumors grow under my cafe aulait birthmarks.
They aren't moles though.

I have never heard of a Mole being called a Neurofibroma , just tumors (Neurofibroma).

Glenda57 · 04-02-2002, 03:30 PM

Please do not discuss moderation issues on the board.

If you wish to contact us please click on the first moderator link on the top-left of the forum page.

Thanks

moderator3<p>[This message has been edited by moderator3 (edited 04-03-2002).]

Glenda57 · 04-03-2002, 07:51 AM

Hi Vikki , I hope you can get the assistance that you need with your health problem.
I face the same health disorder , and I know it can be very trying at times.

Sincerely , Glenda<p>[This message has been edited by moderator1 (edited 04-03-2002).]

04-03-2002, 08:45 AM

Websites can be found by doing an internet search with the disease name.

Do not post websites that have chats/message boards.
If you are unsure if a website is allowed, email the link to the first moderator listed for preview.

Thanks for complying.
mod1

Glenda57 · 04-03-2002, 11:43 AM

Thankyou for letting me know.

Sign Up Today!

Join Our Newsletter

Whoops,

Thank You