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Neurofibromatosis Message Board
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Old 01-04-2002, 08:47 PM   #1
Glenda52
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Question Who has Neurofibromatosis ?

How many board user's suffer from Neurofibromatosis ?
For those that don't know what it is > it is a neurological disorder where you have tumor's grow on nerve sheaths thru out your entire body.
This is just a easy discription of it.

 
Old 03-15-2002, 07:12 PM   #2
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hi, I just had to reply, I have a 8 yr old boys who has NF, 1, he has alot of complications from this , too many to get into just now but I thought I would let you know there are others out there with this

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Old 03-23-2002, 05:47 PM   #3
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HI, I JUST FIND OUT I HAVE NEUROFIBROMATITIS. THERE FIND IT IN A MOLE ON THE BACK OF MY NECK WHEN IT WAS CUT OFF. IM 52. I HAD THE MOLE CUT OFF BECAUSE IT WAS GROWING.

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Old 04-03-2002, 03:35 PM   #4
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Thankyou for the replys.

 
Old 08-10-2003, 11:27 PM   #5
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Glenda I have it and I am 34 years old. Right now mine is in a mild state. I have noticed a few more tumors since my hysterectomy in 2001. I have 2 friends within a 20 mile radius with the same disorder. My husband is supportive of me and esp when I am in pain. I have had 5 MRI'S and 1 Ct and they were both clear. That is Brain and Spine, I have also had a myelogram of the spine (ouch) I say that because they hit a nerve going in. I was able to watch some of the process on a tv till the Valium kicked in and I went to sleep. The Myelogram was clear also, I will mention I have scolosis and Degenerative arthritis in the T- 4 5 6 area, Celebrex helps this but ask your doc if you are on SSRIs. Any way hope this helps.

 
Old 08-13-2003, 06:48 AM   #6
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Hi Glenda--I also have NF type 2 . I have bilateral accoustic neuromas--the right one is 4 cm. I had a huge spinal cord tumor removed from my brainstem to C-7. It is growing back. I also have around 9 more farther down. this is an awful disease--and I feel for your son. The good news is it can be either severe or relatively harmless. I hope my 10 year old didn't inherit it. He was born just before I found out.

 
Old 08-13-2003, 04:21 PM   #7
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CALGAL---Do you and the other affected folks live near or downstream from a nuclear plant? If not do you remember how they used to spray DDT for insects years ago? Me and many friends used to ride our bikes in the DDT fog--it smelled good. The reason I ask is this disease is supposed to be hereditary----I am the first in the family to ever have it. My close friend has accoustic neuromas--he used to ride in the fog with me too. I think there must be a trigger substance nearby--there are a few others who have NF in our small town also.

 
Old 12-11-2003, 10:12 AM   #8
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Re: Who has Neurofibromatosis ?

I am 4th generation NF. While I have had few complications, my mother did. She suffered from the tumors in her intestional track and had to have several surgeries as a result.

 
Old 12-13-2004, 07:50 PM   #9
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Re: Who has Neurofibromatosis ?

I posted on the main board then found this, my friend has this disease, and I thought it would be of help to her if she can talk to others, as it seems to be a very rare disorder, should someone reply I will get her signed up to the health boards
thanks
Sue

 
Old 12-15-2004, 12:56 PM   #10
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Re: Who has Neurofibromatosis ?

I have NF1.I have tumors everywhere.I have been fighting doctors the last 3 years.They found a tumor in my spinal cord and several around the spine on the low spine.They haven't looked at the top or middle spine.I am in major pain all the time.

 
Old 12-28-2004, 06:36 AM   #11
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Re: Who has Neurofibromatosis ?

Hello,I have NF .I am 34 and have had major problems for 4 years due to NF tumors on and in spinal cord.I have 3 girls and my youngest has been digonesed with NF.My oldest has some of the cafe a olay spots but so far no tumors.Tumors usually show up during puberty and she has passed that.I am hoping she dont have this.My middle daughter has spots also but no tumors.My youngest is covered with spots.Doctors say she has a bad case of NF like I do.I just hope she wont have the trouble I have or my Mother has.My Mother had a brain tumor but they were able to remove it all.

 
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