Hello all! I haven't been on here in awhile, but I have a question and I know from my last post how supportive and helpful everyone here is so I am coming to you.
A quick story: I went to see a primary care doctor, someone who can work with me on a more general basis than Mass General, communicate with my neurologist, and prescribe meds. I listed all of my symptoms, TN/ON/and beyond, it's a long list. He looks at me, after I trusted him with my personal health information, and says "you sound like an old car I have had for 20 years that is FALLING apart." Yes, that is just what someone wants to hear when they are trying, even that day, to feel and look even halfway normal. He is my age and his lovely, put together wife who doesn't have health problems is right outside in the hallway. He prescribed meds for TN/ON but would not write a script for pain and has not responded in two weeks to any of my calls about issues with the new meds and the intense pain level.
Feeling confused, sad, angry and humiliated has turned into the drive to find a primary care doctor who understands bilateral TN/ON and demyelination.
Does anyone know a PCM in Maine or even NH who has a grasp on TN/ON/demyelination/etc?
Thanks, and stay well all!