The Nf Diaries

Welcome! I've already started a montly newsletter and video series for others to share their stories about NF and now I wanted to start a blog to keep everyone updated on my status with NF. My story is Episode 1 of the NF diaries on youtube www.youtube.com/thenfdiaries . There is more to my story then what I put into the video and even more then what was put into the newsletter . ( to subscribe email TheNfDiaries@hotmail.com .)


 Growing up NF didn't affect me much, not that I knew of then anyways. I remember complaining that my back bothered me. I found out that I had a slight curve and was sent to physical therapy for a short time. After that because I started to feel slight improvement my doctor assumed it was fixed and dropped the therapy. I found out years later that a curved spine is part of NF and my back still bothers me to this day.


I also get frequent headaches that is also part of NF. Not to mention high pulse rate. My old doctor actually accused me of being on drugs for that and demanded a drug test. Which I had to pay out of pocket for to prove I wasn't on drugs.


It just amazes me how many doctors don't know anything about NF. There has been several things written off as nothing or thought to be something else that where all related to NF. I recommend looking for a doctor in internal medicine. They are in no way experts but they do know more then your regular MD.
 

Later thins month Ill be going up to OHSU to see if they want to do anything about my tumor that has grown. They are the best doctors here is Oregon and if they are the ones to go to if I need something done with it. Ill be sure to keep you all updated as things progress and maybe even do a video about it. In the mean time be on the look out for more video's on youtube and a newsletter every month.
 Peace love and applesauce
Crystal