I was diagnosed right in the delivery room with Neurofibromatosis. I had 2 Cafe AuLaits Birthmarks , and 1 Tumor (Fibroma) on my leg.
I am 50 years old now and have Thousands of tumors all over my entire body. And my spots add up to over 20 now.
I also have internal tumors on my organs.
Had to have a total hysterectomy in 87 due to endometriosis and a bleeding tumor on my right ovary.
My NF is a severe case and I am in alot of extreme pain due to tumors all over my entire spine and leaking spinal fluid too.
I have tried every hard narcotic known to man kind and have now worked my way up to taking Morphine (MS Contin). I have been on it 2 and 1/2 years.
My doctor is weaning me off of it because it causes side effects. Limb twitching and ocassional heart palpitations.
If you want more information contact the childrens tumor foundation.
They are full of excellent information and can help you.