Hello to all:)
I’ve hesitated to write this. Not sure why. Fear, mostly, I think. Took me a couple days of being on here and reading the posts and profiles of some Very strong people, to realize it might be a safe place to share. I have had progressive symptoms of this disease since 2015. One year after the passing of my mother who passed after 30 years of decline from these symptoms. She begged for answers. After 20 years, and the crushing final Neuro report that she was “hysterical” she gave up, went to pain management and went to bed. So, when my journey began, you can see that I would be hesitant to fight the powers that be and receive my Own diagnosis. Kinda for her too:) So, 5 yrs later, many docs of All kinds, my Mother’s very telling records, I may be close, for her, for me, and hopefully not, my children one day. They say its not hereditary, but in 2016 the Canadians discovered a gene that can be passed. Or not, I am hoping. I appreciate you all as I begin my journey, no longer alone, hiding, denying, but standing up, fighting back.