Recently diagnosed with AL Amyloidosis: Any advice?
My mom was recently diagnosed w AL Amyloidosis, our local hospital missed some important tests . We just had our first trip to Mayo. I feel now that my mom is discouraged and more scared than before and is declining quickly. Our local hospital did not show concern for the heart however when I look at her labs from Mayo that were done yesterday it indicates differently. I never knew what this disease was until my mom got it and I’ve been fighting hard for her since. I begged our local hospital to check heart bio markers and they just brushed me off . I’m sad , frustrated, and I just hope I’m wrong in her results that have returned thus far. She has bad neuropathy and some kidney involvement. My mom is only 60 with 4 grandkids under 10 and one on the way. Advice or suggestions on navigating all this is welcomed