- CASE FILE
I have been diagnosed with 2 NIH rare diseases, but I have been getting worse since October. my health continues to decline, drs are stumped
ABOUT THIS CASE FILE
6 years ago I woke up with what I thought was a case of Bell's Palsy. I have a history of Bell's palsy and pediatric shingles. I was diagnosed with two NIH rare diseases one has no treatment or cure. Last October 2018 I took a turn for the worst. I've lost more than half of my body weight and my heart is not acting properly, as well as unknown brain lesions among other things. I've been to see several Specialists, including six infectious disease specialist over the last six and a half years. Multiple specialist in multiple departments and I have been told that they have never seen a case like mine before. I have also been told that they're not sure how I'm still alive. I have taken several Pharmaceuticals as well as using medical cannabis to assist with my ongoing symptoms and misdiagnoses. I am also a patient advocate with the us pain Foundation. Now I find myself needing an advocate to help me figure out what's wrong and reach my 40th birthday. The brain lesions have caused significant cognitive impairment for the last year. I am in desperate need of help please. I was even diagnosed with cancer and then that diagnosis was rescinded. I am at a complete loss right now and I'm seeking help of any kind. I have hundreds of photos but I can't tell if they're uploading.