Just ask him “could this be and could you test for amyloidosis” be pushy be your ow advocate!

My wild type amyloidosis was discovered through a heart mri. I went through alot of what you are dealing with. I am now being treated with 61 mg vyndamax for amyloidosis.

I only discovered I had Amyloidosis after an MRI! CT scans are unable to spot that disease!

Hello again Sandra2, My first post was too long so I had to divide it. Do you know if you have had a serum and urine protein electrophoresis and immunofixation done to see if there are any monoclonal proteins present? I would hope that your doctors performed those tests along with the free light chain test. The FLC's can both be elevated when kidney damage is present. Mine were both in the 50's last time they were checked and its due to stage 3 kidney failure caused by long term NSAID use for psoriatic arthritis. my ration was in normal ranges. There is a type of Amyloidosis, AA, that can be caused by long term, untreated inflammatory issues and it mainly targets the kidneys, but can also impact other organs. Since you mentioned fibromyalgia, you may ask to have your SAA (serum Amyloid A) levels checked to see if they are also elevated. Have you had any biopsies done (fat pad, bone marrow or organ)? A tissue biopsy is required to diagnosed AL and AA amyloidosis. Wild type cardiac ATTR amyloidosis can be diagnosed via a PYP scan, but the test really needs to be performed and read by someone who is very familial with amyloidosis. Hereditary cardiac ATTR amyloidosis can also show up in PYP scans but that type must be confirmed with genetic testing to make sure a mutated gene is present. There are at least five types of amyloidosis that can impact the heart, and it is extremely important to verify which type of amyloid is present because treatments vary with the different types. If at all possible, you need to see doctors with experience diagnosing and treating amyloidosis. Mayo is the closest hospital to you with that experience. They can diagnose in a few days, what takes less experienced doctor's weeks, months or even years to diagnose.

Paula

Hello from Albany! And yes, that is Albany GA, not NY. I can well relate to having problems getting a correct diagnosis. It took me two biopsies, three doctors and 13 YEARS to get a correct diagnosis of localized amyloidosis in Albany. While Tallahassee may have some great doctors, Jacksonville and the Mayo Clinic is where you need to head. They have a Clinic that specializes in Amyloidosis. It is headed up by Dr. Taimur Sher, https://www.mayoclinic.org/biographies/sher-tai.... They also have several fabulous cardiologists there and one of their cardiac amyloid specialists, Dr. Melissa Lyle, actually grew up in Cairo: https://www.mayoclinic.org/biographies/lyle-mel.... I highly recommend that you watch this recent webinar on cardiac amyloidosis before you go see your hematologist. It may help you formulate some questions that you should ask while at your appointment. Dr. Lyle is one of the speakers on this webinar and you will see just how brilliant she is. While the full video is a bit over 2 hours, it is divided into sections that you can choose and pick from if you don't have time to watch it all. https://www.youtube.com/watch?v=A9g6r1PQkOM
I am the facilitator of the Amyloidosis Support Groups meetings that are held at Mayo Jax and we have our first post covid meeting scheduled for June 29th. While I hope you don't have amyloidosis, if you do, I hope you can make it to the meeting.

Paula Schmitt

Taimur Sher, M.B.B.S., M.D.

https://www.mayoclinic.org/biographies/sher-taimur-m-b-b-s-m-d/bio-20055521

Melissa A. Lyle, M.D.

https://www.mayoclinic.org/biographies/lyle-melissa-a-m-d/bio-20491562