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The first thing you do is find a good NET Specialist. One that YOU are comfortable with and will listen to you. If they do not let you talk - then they are not a Doctor you want. You need to be able communicate with your doctor. You need to feel that they are the person that can help you manage your disease.
I wish that I knew what I know now back when I was first diagnosed. I would have dropped my doctor back then and found myself a Specialist. I would have done more research on my own.
THE OTHER THING I CAN STRESS ENOUGH IS - BECOME YOUR OWN ADVOCATE! Do your research, know what you want - hear what your Specialist says - and make the decision that you are most comfortable for YOUR situation. DO NOT LET FACEBOOK CHAT GROUPS FOR THIS DISEASE TRY TO SWAY YOU TO A SPECIFIC DOCTOR OR GROUP OF DOCTORS - ONLY YOU CAN CHOOSE THE DOCTOR THAT YOU WANT TAKING CARE OF YOU.