Amyloidosis - but no type yet. How do I get that?

I would see my family doctor and ask questions. I would Asked if I needed to go to a specialist.
Ask questions if you don’t understand, ask him to clarify
Write things down a small tablet you could carry in a bag with you is the best.
Talk to your family and friends for Support
I wish you the best

I'm sure the referral to a heart failure doc was a shock. It's a great sign that you don't have heart signs like shortness of breath and foot swelling. I imagine the referral is because the disease isn't common and the doc may have more experience with amyloidosis than others in area. He also probably wants the doc to do echos and other tests so that if you have cardiac involvement, (you may not), it can be caught early and treated.
Cleveland Clinic had some good info on their site. I linked one article below.

There's also the Amyloidosis Foundation which has a list of centers in case one is close to you.

Here is an article about carpal tunnel and amyloidosis. https://health.clevelandclinic.org/attr-cm-and-carpal-tunnel?utm_source=google&utm_medium=ppc&utm_campaign=cc_cs_ag_175165839515&utm_content=cc_cs_cid_%7Badid%7D&gad_source=1&gad_campaignid=22198030319&gclid=EAIaIQobChMIpey7svvhjQMVPVj_AR0I_idNEAAYAiAAEgJ1d_D_BwE

Note-it says all patients who have carpal tunnel amyloid do not get the cardiomyopathy and that the cardiac disease is now treatable.
Good luck and keep us posted.

Thank you so much for your reply. I’m going to check out the link. Thank you for encouraging words.

I could have stated that last paragraph more clearly, I think. While some patients with carpal tunnel do get cardiac amyloidosis, not all of them do.

Consider getting an abdominal fat pad biopsy (assuming they didn't take that for the carpal tunnel work). It is good to get a second opinion/verification before treatment. Fat pad is quick and minimally invasive. My DNA mutation was from a bone marrow biopsy. I don't have amyloidosis, but was checked for it last summer (MGUS). https://www.mountsinai.org/health-library/tests/abdominal-wall-fat-pad-biopsy https://my.clevelandclinic.org/health/diseases/23398-amyloidosis https://ashpublications.org/blood/article/139/19/2918/476883/How-I-treat-AL-amyloidosis

Thank you. I wondered what it was and how it was checked.

I had a diagnosis of amyloidosis this year after a bilateral carpal tunnel surgery biopsy done by my surgeon came back positive. I was referred to a amyloidosis specialist in Chattanooga, TN at the Heart Institute. I’m lucky that we have a great specialist, Dr. Henry Chang, here in my home City. He sent my biopsy to the Mayo Clinic for the type testing & it came back positive for Attr “wild type” amyloidosis. I will be having the Amvuttra injections quarterly to treat it. I understood that Medicare part B will cover the treatments which is a blessing. It is because of the hard work and effort by Dr. Chang that my amyloidosis was caught early. He sent out notification letters to all surgeons in many areas who performed carpal tunnel surgeries asking them to biopsy their patients.
God bless him & the doctors who complied with his request.

I would like to be kept updated as to how you are tolerating the injection.
I now have an appointment at Mayo with also a Dr Chang cardiologist specializing in amyloidosis - in a few weeks. I hope they can determine a type.

That article is great!! I had my kids and husband read it to help them better understand.

I'm glad it was helpful!
I've been to Mayo a couple times and it's an impressive place. I'm glad you're being seen there.