My name is Paige.I have NF 1 I have very severe pain:( I take Dilaudid. I wear a fentanel patch changing it every 3 days and at times its so bad my mother gives me demerol shots and I'm only 21 and I take that much pain meds.Email me at. Cancerchamp07@aol.com
Please note the zero is not a o in my email it's 2007 when I had cancer so I have it as 07 hope to here from you NF family. I'm the only one with NF in my family. Hope to here from you
My brother was recently diagnosed with NF1 and he is having a hard time dealing with it, and so is my family. I am worried about some headaches he's been having lately..do you have headaches as well? I am concerned he may have a tumor growing in his head, which may be causing the headaches...
I wanted to let you know you are awesome and never feel bad about who you are. You are a wonderful man, just like my brother! <3
@xSakuranokaorix i have nf also with 2 brain tumers i smoke weed and it helps in meny ways stops pain like headaches , i have sezures the weed helps stop sezires and the pain after and it helps 2 deal with all the stupid people , do u live in a med marijuana state ?
Hey brother, I think you are a brave and amazing human being, and I can tell you that there's nothing to worry about. I also believe I have the condition, but mine represents with cafe au lait spots on my back and small soft bumps on my biceps, triceps, legs and some on my torso. Mine aren't visible to the naked eye but can be felt. I guess we are just special people.
My name is Paige.I have NF 1 I have very severe pain:( I take Dilaudid. I wear a fentanel patch changing it every 3 days and at times its so bad my mother gives me demerol shots and I'm only 21 and I take that much pain meds.Email me at. Cancerchamp07@aol.com
Please note the zero is not a o in my email it's 2007 when I had cancer so I have it as 07 hope to here from you NF family. I'm the only one with NF in my family. Hope to here from you
Froglover947 2 weeks ago
My brother was recently diagnosed with NF1 and he is having a hard time dealing with it, and so is my family. I am worried about some headaches he's been having lately..do you have headaches as well? I am concerned he may have a tumor growing in his head, which may be causing the headaches...
I wanted to let you know you are awesome and never feel bad about who you are. You are a wonderful man, just like my brother! <3
xSakuranokaorix 2 months ago
@xSakuranokaorix i have nf also with 2 brain tumers i smoke weed and it helps in meny ways stops pain like headaches , i have sezures the weed helps stop sezires and the pain after and it helps 2 deal with all the stupid people , do u live in a med marijuana state ?
Jimmbob27 1 month ago
I have NF1 also. Several members of my family also have NF.
cutebear83 10 months ago
did u feel that mtv didnt give enough info on nf? by the way i too have nf1
SweetBrwnSuga 10 months ago
Hey brother, I think you are a brave and amazing human being, and I can tell you that there's nothing to worry about. I also believe I have the condition, but mine represents with cafe au lait spots on my back and small soft bumps on my biceps, triceps, legs and some on my torso. Mine aren't visible to the naked eye but can be felt. I guess we are just special people.
AskariWaryaa 1 year ago