Neofibromatosis (Genetic Tumor disorder) - Neurofibromatosis Message Board

onedustytrail · 06-24-2008, 12:35 PM

I was born with Neurofibromatosis. I have thousands of tumors all over my entire body and internal tumors on my spine and various organs.

I am in Extreme Pain from my spinal tumors and take MS Contin for Pain controll. I have been on it 2 and 1/2 years and it's lost it's effectivness.

Anyone here have Neurofibromatosis ?

How do you cope ?

Moldova · 06-24-2008, 01:42 PM

Honey,
I don't have this condition but I read about it and I know what this is and what you have to deal with every minute of your life.

I just want to say I am so sorry you are in so much pain; I wish I could help you more. I am very happy to came to this board for support: people are so wonderful here and I am pretty sure it will help you with your problems. Often talking to people who understand how tought to leave with CP may help our minds to cope with it better...

Best of luck you! Best wishes...

trowftd3 · 06-24-2008, 02:32 PM

Welcome to the board! This is a great place to come to for support. We are family here!

Sorry about your affliction and the pain it brings you. What other meds have you tried? What does your doc say about the mscontin not working any more? I take Oxycontin. I have tried other drugs but this works the best for me. It's no fun being a guinea pig while trying new drugs but the pain control is worth it.

Good luck from a fellow Washingtonian.~Mush

RYDER2008 · 01-01-2009, 11:55 PM

i also have nf half of my fam does too i have one in my arm and it requires surgery because the extreme pain . and the people who feel sorry for us dont realize the pain and agony we have to deal with day after day. i also have tumors in my neck on my lung behind my eyes well pretty much everywhere. so onedustytrail maby i am the onlyone at this time who feels your pain have you tried GABAPENTIN I am taking 300 mg and need to go up to 600mg it works but makes me sleepy

RYDER2008 · 01-02-2009, 12:34 AM

Nf effects the nerves so pain meds dont work what we need for pain is nerve blockers