This is a common situation. All types of Amyloidosis are rare diseases and difficult to diagnose. It took me 10 months and a whole lot of medical appointments to finally get an ATTR diagnosis and another 6 weeks to work out a Vyndamax prescription situation I could afford. Pfizer is only just recently advertising on TV & radio, listing symptoms, then saying “see your cardiologist.” I did copious hours of research online to be able to advocate for myself.

It took two years for me to be diagnosed. My cardiologist and pulmonologist ran every kind of test they could and finally my cardiologist decided to run a pyp nuclear heart scan which showed the folded amyloid proteins in my heart. I just started on Vyndamax yesterday.
I sincerely believe this is what my mama had and was not diagnosed. I have so many of the same symptoms she had before she died. I had never heard about amyloidosis then ori would have been advocating for her to be tested. We are waiting for the genetic test to get back and then I will know for sure.

Excellent?!! I can tell u it is still a struggle here in SoCal with any doctor other than a cardiologist, who can truly grasp this rare disease. I do all I can to keep myself up to date on my disease. I also subscribe to a few UK SCIENTIFIC publications. I find the UK is far more advanced than the US. Bottom line: cardiac AMY put an end date stamp on the bottom of my foot!! It is critical that I fight for every day!!

Law suits are expensive and not a sure outcome. You need a lot of evidence that there was wrong-doing. Do you have documentation -- in print, audio recording, video recording that you requested an amyloid test? I got the genetic test which showed I had the gene -- the same gene as my mother who died from amyloidosis, and my healthcare provider refused to pay for the fat-pad biopsy, which is the only "real" test for amyloid. My healthcare provider said there was no evidence that I had the disease so I could not get the test. Believe it or not, they got away with that.
Doctor's say that they do only what their Medical College recommends, that way they never lose a law suit. If your doc followed their Medical College recommendations, then he/she will win the law suit. The problem is that the Medical Colleges have NOT included amyloid testing as a recommendation.