Comments | nf_info_support: Hello

fifi_the_skunk in nf_info_support

Hello

May 08, 2005 11:42

I wanted to say hello. I have been diagnosed with it since I was very young. It never really inhibited my growth or learning, but always made me aware of my body and what it looked like. I have many of the purplish tumors ( Read more... )

Comments 5

megmeg22 May 8 2005, 16:25:38 UTC

Hi and welcome!

As for the pain in fingers and toes...I don't get that. But I have in the past been denied by my insurance for a surgery to remove a tumor. I finally had it done after a battle for several years trying to convince them it wasn't "cosmetic" because the tumor was on my face...and it grew back...twice.

dave_morrison May 8 2005, 19:57:54 UTC

hi, welcome, i get the pain in the finger tips, esp if i brush it against something, or touch cold objects even paper, cold weather etc, it is really bad i felt like chopping off my finger once. it might be connected to raynauds

http://www.niams.nih.gov/hi/topics/raynaud/ar125fs.htm

fifi_the_skunk May 8 2005, 20:23:42 UTC

I have been on disability for over a year now as the doctors try to figure out whats wrong. I have curled up in a ball on the floor the pain was so bad. I am taking 400mg Kadian a day and it still doesnt help. Was up to 4000mg of Neurontin a day too before they notice too many mood swings and removed me from it.

As for the other, I know this is wrong but lie and say its causing you pain. By insurance defination, they have to pay to have it removed since it would be considered cruel and unusual punishment. Insurance companies have provisions for things that may or may not cause pain but not for cosmetic.

knottyman May 8 2005, 22:13:49 UTC

YES!!!!! I GET THE SAME PAIN. It wakes me from my sleep sometimes.I don't know what causes it either, when I first told my docter about it. He said it was carpel tunnels syndrome. I sais B.S.. i GOT UP TO 900 mgs. a day on Neurontin a aday before I took Myslef off of it. There are lawsuits of docters over prescribing it and the drug companies are behind them wanting to prescribe it. I used to only get the pain in my fingertips without the thumbs, now thumbs get the pain. I sometimes occurs in one tip or one hand and sometimes all and both hands at once. the toes when it happens it really bad i have one toe I can feeli it coming on and it sends a jolt up my leg and thru my entire body.I sometimes can't type because of it.
Insurance I don't have I have to pay for every thing out of pocket.
Here is a link to a other NF group I just joined on myspace.com

http://groups.myspace.com/NF

fifi_the_skunk May 9 2005, 00:06:42 UTC

The pain is extremely bad. I have been the ringer of tests. Everyone who knows me said I went through extreme mood changes and it cost me many things dear to me including friends. The pain has cost me so much already that at one point I had considered suicide (I talked to a doctor about it).

I am considering talking to a lawyer now. Because of the medicine, I don't even sleep anymore (unless you consider 50 minutes of sleep a restful night)