You’re the first one to mention vocal cord issues. hATTR patient here, have had so much trouble clearing throat, speaking. I live in beautiful Sonoran desert near Mayo Phoenix. Love your mindset.
Thank you for your inspiration Dan. I was diagnosed with AL amyloidosis in late August 2023 after many tests, scans and bone marrow and fat pad biopsy. I'm on my 7th treatment of CyBorD + Dara and have mostly good days but Wed and Thurs are a challenge but I'm getting through those days and managing well. I have been following all your treatments along with mine so I have watched your 7th. I can say my experience parallels your's but you certainly bring a good perspective and mind set which I am very grateful.
Hello, My mom, my oncle and I have amyloidosis H-ATTR. I hope you're doing ok. I've been following since the beginning of your journey and you have been of great help. It's weird to think there are so few of us and we are so far away from each other. I'm pretty sure my uncle is one of the first in my country to have been diagnosed with Amy. I won't lie, it's been hard to watch the people I love getting worse and feeling myseld getting worse every day. Sending you and everyone else good vibes and positive energies.
I feel like I'm chasing my tail. It started when a simple urine test revealed VERY high Kappa Light Chain protein. However it did not corrulate in my blood serum. I had a bone marrow biopsy & fat pad biopsy & both were negative for amyloidosis. But I have all the symptoms. I waited 6 months & retested my urine & blood with same results. I think this is beyond my current doctors. I found all this after a diastolic heart failure & a mini-stroke. This also resulted in Central Sleep Apnea/ Cheyney-Stokes-Breathing. Any thoughts?...advise? Peace, Steve
@@dragonflypurecbd3656 Hi Dan, I live in the Kansas City area. I have been seeing a Cardiologist, Hematologist & Neurologist at the KU Medical Center. Next stop is a kidney specialist.
