sharon
sweetie, I know just how you feel, I have Neurofibromatosis and have known now for nearly twenty yrs, however it took 3 yrs to be diagnosed. I was only 10 when I first started having problems and we had no one else that we knew of in the family with NF. I went from doctor to doctor and loads of hospitals and was told it was all in my head or I was just trieing to stay of school, one doctor said "the only thing that will cure you is a good psyciatrist" and tried to make me have anti-depressants which I refused. I was lucky because my mum was a nurse and knew something was wrong. By this time I was getting lots of lumps all of which a\re internal, I have no visable signs at all. In the end we found a doctor who knew what it was but even then he did not know much about it and we had to find it all out for ourselves. You need to insist on being refered to a Neuro specialised or a NF clinic, if your doctor will not listen find a different doctor, with NF in the family already you n eed to be seen by someone who understands. Alot of doctors who know nothing about NF tend to become defencive and denige there is a problem. If I can help further please email me anytime.