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I was born with a genetic birth deffect called Neurofibromatosis and that causes your body to grow hundreds and thousands of Tumors all over , and inside your body on organs and spine.

I have several dozen spinal tumors and have constant pain
I've tried Every Narcotic known to man , and all of them cause Horrific side effects and they don't relieve pain at all.

I had a tumor removed off my left lung in 1995 and I now have scar tissue build up pain damage.
Due to recent coughing for 5 months I was sent for a Cat Scan and a Tumor was found InSide the left lung.
That causes additional pain for my left chest.

I have several brain Hamartomes and that causes headahes.
I have tried medication for that too , and nothing helps.

Does anyone else suffer from this Genetic Disease.
I would enjoy talking to you.



I also have this genetic disorder, but I did not feel any pain from inside my body,

Tumors grow all over my back, and some on my hand. I thought you had a very comprehensive examination about your NF. I only meet my Skin Doctor to remove my tumor on my neck, never do the MRI scan or else that NF people should do. That’s why I do not know what NF do inside my body, but so far I just feel well no pain at all.

It is nice to talk to you, Thank you.


Hi. I am also have NF but I have NF 1 which is one large tumor that keeps growing back but I got very lucky. I take gabapenton for my pain. My doctor told me that narcotics do not and will not help actual nerve pain. There are several different medicines for nerve pain its basically seizure medicine but it helps a lot. When my nerve tells my brain I'm in pain the medicine tells my brain that its a false signal.