I was very fortunate in getting a diagnosis. In preparing for usual PCP visit in 2023 I added under minor topics two very minor episodes of very minor chest pains of duration than 10 mins each. Upon seeing my reference to chest pain on my prepared agenda my PCP promptly ordered an ECG, which then showed a very minor irregularity. She then promptly referred me to a cardiologist which was followed with numerous visits and numerous tests. Within 4 months I had a definitive diagnosis which is not good but at least accurate, ATTR-PN & ATTR-CM.
I wish better luck for you in getting a diagnosis so you can get the best and appropriate treatment.

I have had a horrible time getting a main hematoligist! Every time I have called a center of excellence they asked me what type, did I have a biospy and blood work. I have to say no because there aren't hematologist trained in Amyloidosis in Morris County, NJ. I have many severe symptoms as stating in the various articles here and truly am suffering from pain, tremors, dry mouth, dry swollen eyes, uncontrolled inflammation, brain fog, now diabetes 2. My carpal tunnel pain is nonstop and nerve pain in my arms throughout my muscles, neuropathy in my feet. My vision is spasmotic, with Intermittent photophobia and double vision. I pray we can find the right doctors as soon as possible. IJNIP. 🙏