Discussions By Condition: Medical Stories

new here

Posted In: Medical Stories 2 Replies
  • Posted By: Anonymous
  • March 4, 2008
  • 03:22 PM

I have neurofibromatosis but doctors know nothing about it.I have cronic back pain and hip pain.They have no clue as to whats causing the hip and back pain.My hip has goten so bad at times I cannot walk.

Reply Flag this Discussion

2 Replies:

  • have had MRI's lots of them,Have had blood tests to check for Iron,Lyme desese,MS,all kinds of stuff,The neurofibromatosis I was born with as were my brothers,My Mother,her Dad and on and on back as far as Abe Lincon.I really dont belive my spinal tumors attacking my spinal cord are due to my Neurofibromatosis.I think its something different.I have had an EMG that tests for nerve function loss and my nerves are going bad.I have no reflexes any more.Those have nothing to do with NF.I want the tumors OUT and the constant pain GONE.I take no pain meds cause now I can't go to a doctor.As far as tests I have had tons.I think they need to test for cancer.Its the only one I haven't had.And it would explain the pain.
    Anonymous 42789 Replies Flag this Response
  • hi my name is Kelly i also have had nf since birth it had caused a great deal of pain on my back and right hip recently we found out that the tumors from nf have caused my spine to twist causing my pain in back and hip if you want to talk more about it just send me a message.
    nf1mommy 1 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.