Welcome to Connect, @tollie It sure helps to feel that you’re not alone when you have a new diagnosis. There are a number of members in our forum with Al-Amyloidosis, so let’s get you Connected! Hopefully they can help give you the information you’re looking for regarding what questions to ask your doctor and how to navigate through this new diagnosis and potential treatments.

First, here are a few links to informational articles on Amyloidosis:
http://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178

Also from Mayo News Network: https://newsnetwork.mayoclinic.org/discussion/what-is-amyloidosis-and-10-signs-you-might-have-it/

From the Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/22598-cardiac-amyloidosis
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Below are just a few of the many conversations where you can meet other members who have Al-Amyloidosis such as @countrygirlusa @blackscarecrow @jenrico @azlatina @0820 and others in multiple posts.
You can find more by typing in Al-Amyloidosis in the search bar at the top. But these will get you started. ☺️

Links to discussion about Al-Amyloidosis
https://connect.mayoclinic.org/discussion/al-amyloidosis-maybe/

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Recently diagnosed with AL Amyloidosis: Any advice?
https://connect.mayoclinic.org/discussion/al-amyloidosis-2/
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https://connect.mayoclinic.org/discussion/diagnosed-with-al-amyloidosis-would-like-to-hear-from-someone-about-what/
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Diagnosed with AL Amyloidosis. What can I expect? (This is an older posting but worth perusing through all of the replies)

This reply contains videos with information about AL Amyloidosis. https://connect.mayoclinic.org/comment/732756/

Will this be your first visit with the hematologist?

I'm not sure if this will help but it can't hurt. My Kappa Light Chains are at 45 and I was freaking out. I went to see my Dr and he was so pleased to see them "so low" I asked him what he was talking about and he said he has seen 300 and 400 and that I should enjoy my summer and see him in 6 months! Granted, I am otherwise very healthy but I do have MGUS. I just wanted you to know that one number in itself does not make a full picture.

Thank you I know nothing about this disease I have been battling HCM since 2013 since Jan 23 my symtoms have changed or different heart kidney and liver numbers have been all over the place. I was reffered to a heart transplant team but according to them my numbers was not there yet and have actually improved. But my episodes and symtoms have got a lot worse. I have been always active but my shortness of breath and extreme fatigue and weakness numbness in hands and feet have slowed my out door activities. So I went back to my hcm Dr he done bloodwork heart cath and other test he said fluid is building up and my kappa numbers where elavated he rulled out amyloidisis all except AL amyloidosis and is sending me to a hematoligist. Hopefully if this is my problem we caught it early. All I know is my symtoms are different now than before

I was wondering if I can have a high free kappa light chain and not have anything? In my blood tests it said that my kappa light chain was 2.62. In PROTEIN ELECTROPHORESIS PATH REVIEW, SERUM it said no monoclonal protein identified. Does that mean my doctor will do a bone marrow test next? Almost 2yrs ago I had squamous cell carcinoma growing in/on my foot. I had it surgically removed and was monitored with blood tests and PET CT'S. My doctor moved from within that hospital company to a new one. I liked NY doctor and had to search for him becaise I wanted him to keep being my doctor. Well I found him, he asked me if I've had any changes, I said yes I am tired all the time, I have trouble wanting to eat sometimes(I only get hungry for food once a day, sometimes not at all but have to force myself to eat because I will get nauseous, a headache and sometimes dizzy). He said he was going to do every blood test, even to check for anemia. He ordered a PET CT for me to take anywhere to have since I live so far away from where he practices now. My Free Kappa light chain is high. Any thoughts? Or ideas as to why?