It may be that the doctor was testing for AL Type Amyloidosis. That’s what I was originally tested for, turns out I have Wild-Type which is diagnosed by a Cardiologist. If you haven’t been seen by a Cardiologist I suggest that you do so ASAP. Best of luck!

The electrophoresis may show up on bloodwork as SPEP and UPEP, (Serum protein electrophoresis and Urine protein electrophoresis). Another test that should have been done was serum and Urine Immunofixation (SIFE and UIFE). These tests, a long with serum free light chains (FLC's) are useful to help rule out AL amyloidosis as a possible diagnosis. If these tests are within normal ranges then AL amyloidosis is not likely.

I am attaching an algorithm that physicians should follow to help know what to test next.

Once there is suspicion, the diagnosis is easy. I’m baffled by these accounts of delay. I learned definitively two days after a cardiac MRI what was going on.

Thank you for your reply. You are correct, but in reverse. A cardiac Amyloidosis specialist diagnosed me with either ATTR or hATTR and ran genetic and blood tests. Then he said I don’t have either and released me with no direction. I finally convinced my hematologist to do a bone marrow biopsy and am waiting for those results. My neurologist, who says I have CIDP, is resistant to doing a muscle biopsy but my research shows that AL with muscle and tendon involvement, though very rare, is my likely issue.

Thank you. The chart is very helpful. I can chart some of what's been done within it but not all.