My Story

I was born with this condition called Neurofibromatosis, sometimes called NF. My earliest memory was 2nd grade when I was asked what the tumor like thing on my bicep was. I didn't know so I told the kid asking that it was a double muscle. I was in high school before I had a name for it. At the same time a CT scan showed something or so they thought. a 2nd ct scan found nothing. I was the butt of a lot of teasing throughout my school years, because of my NF. Still, I was able to joke and make the claim that the one tumor everyone really saw was a double muscle. In fact one day on the school bus going home a kid asked me what it was. Pointing to the one on top of my bicep (the only one visible to everyone at that time). I told him that it was a double muscle. He called me a liar, by saying it is not and hitting it with a hair brush. The brush broke in half. While he was in shock, saying, "that was my girlfriends brush." I looked at him and just said, "told you (that it was a double muscle)."
 ---- Fast forward to 1995/1996 ----
I was in my late 20's utilizing Cook County Hospitals socialized medicine (Fantis clinic) which used an MRI to scan my head. (couldn't look any further lower because of the metal rod in my back due to scoliosis) That MRI revealed 2 spots on my brain.
A MRI check up a year later showed no growth.
  While I was in Chicago, and utilizing the services of Cook County Hospital I had the tumor on my bicep removed.

my scar where the NF tumor was removed

After that I was using regular insurance and couldn't afford the deductible so I have not been back for any further check ups. I am now 45 and the wife called Pharmacist Ben's talk show (he is naturapath - healthy food/vitamins for healing) and he believes my problems with hand cramps/pain may be related to the NF.

I would like to make an appointment with a neurologist, but I really don't have the money for the deductibles and co-pays. I am hopeful that by blogging my story I will be able to earn the cash to cover these expenses.  As the blog progresses, I will be posting pictures of some of the spots.
NF Ribbon
hitupmyspots.com