My doctor doesn’t say a stage. When I first got treated they didn’t give me much hope but 5 years later I’m in full remission and my doctor is still shaking his head at me. So just plan on living.

You are so right Terri! I’m in stage II but I plan on being here a long time!

I have had Wild Type diagnosis for a year and a half. I directed a pointed message to my Amyloidosis Doctor after a year of not telling me any in information. The reply was I am likely in first stage as marker level in my blood test was lower than previously. He said my might be a little better, but I still have all the symptoms!

The doctors say that I am rare since I have the Wild Type with no cardiac involvement. I asked about what stage I was in since I wanted to know how long I had left. Because of of my rare status the doctors at Boston University Amyloidosis Center said that I am in no stage, nor would I ever be in a stage. I have now had 46 surgeries most of which they say were due to this disease, I do have severe spinal stenosis, carpal tunnel, bicep tendon tear, and fatigue.

My proBNP is 1950, eGFR 85. These numbers are better than six months ago.