Though I have not experienced your symptoms, I believe you should seek someone to give you a second opinion. Amyloidosis is not well known and therefore, a second opinion is necessary. I recently asked for an MRI after Physical Therapy and shots to relieve the back pain. The Doctor, and even I ruled out surgery, until the results came back. Boy, do I need relief from the unbearable pain. Do not wait to obtain a second opinion if you have kidney and liver problems.

It is time to have a specialist for amyloidosis, kidney, and liver! There are meds to slow the disease process.

Confirmation of my AL Amyloidosis was made with a bone marrow biopsy. It makes sense to do that as the amyloid protein is made in the bone marrow. The doctor did it in my hospital room. The prep work took longer than the procedure. He numbed the area where he made the injection and took the bone marrow from my hip. They could not freeze the bone but there was not much pain. It took about 15 seconds when he got to the bone. I had pain in my left hip. There was a lump, the doctor wasn’t sure if it was cancer or not. They did a CT scan and determined it was a pooling of blood. Another symptom of amyloidosis is that blood thins. I also had bleeding of my gums and blood pooling in my eyelids.

I would insist ! Ask your doctor about do more test.I had a nuclear test done.

I am so sorry to hear that your doctor is not supporting you in your request to pursue treatment for amyloidosis. In my experience, almost any doctor I have taIked to through the years had no idea what amyloidosis is (I am 70). I have hereditary amyloid polyneuropothy (hATTR).
What area of the country do you live in and I am assuming from your post that you have already been diagnosed with a type of amyloidosis. There may be a specialist in your area. I live in the Houston area and my neice is in the Syracuse, NY area.
I am on the FB page for people with hereditary amyloidosis. There are FB pages for all kinds of Amyloidosis. If you are willing and able to share the area where you live, I can ask about the nearest doctor to you who treats Amyloidosis. There are so many kinds.
Best of luck to you as you pursue the ability to get treatment.