Looking for guidance...possible amyloidosis?

Hi everyone,
I’m honestly posting because I’m scared and running out of patience with how slow this has been.

For about five years I’ve had progressive neuropathy that started in my hands and feet and has slowly spread. Over the last year things have gotten much worse with significant chronic pain, GI issues (constipation/diarrhea, bloating, pain), presyncope that isn’t positional, exhaustion, and major sleep disruption. The pain especially has been hard to manage lately.

I have MGUS (IgG light chain), and my blood counts have slowly declined over the years (still in “normal” range, but trending down). A recent bone marrow biopsy showed hypocellularity (~30%). The initial read mentioned suspicious amyloid on congo red, but additional review came back negative, so mass spec wasn’t done.

What’s hard is that my symptoms keep escalating from yearly to now monthly, and I don’t feel like “wait and see” is realistic anymore. Neurology has already been involved in the past along with GI, and symptom-based meds like gabapentin haven’t helped much.

Just hoping to hear from people who’ve been through amyloidosis or other plasma cell disorders:

Did anyone have negative or inconclusive early biopsies?
What tissue ultimately led to answers for you?
How did you push for further evaluation when things didn’t add up?

Any guidance or shared experience would really mean a lot right now.
Thank you for reading. Matt