Tim
I suggest that you go to the Amyloidosis Foundation web site and search for Amyloidosis Centers in your area. I had to do this since there are non in Vermont or New Hampshire. They will work with your own doctor on your future treatments. I found that I had to be my own advocate since no one knows about this disease. I go to the Boston University Amyloidosis Center once a year for three days of testing and seeing a whole litany of specialists. It's an out patient testing. Boston was who put me on Diflusinal and Green Tea. I am also very tired easily every day. In April I had a Spinal Cord Stimulator installed in my back to help with the severe spinal stenosis. It sends a sginal to the nerves in your back to help block the pain signal. It doesn't eliminate it completely, yet it has helped reduce the pain meds. While it's a nasty disease it could be so much worse. Especially with no Cardiac involvement. I also have an incredible wife of 46 years, and two great sons, and their families. Yes it slows me down, but life is Great. Keep your chin up, look online for info, and be your own advocate.

Joseph I too have the wild type and was diagnoses three years ago. We are the rare ones with no cardiac involvement. I was told that Diflusinal is the only medicine for me. You are one of the only other person that I have talked to that has no cardiac involvement like myself. What other symptoms do you have? I was diagnosed at 66 and go to Boston University Amyloidosis Center since there are no treatment centers in Vermont.

I have been on Diflusinal for almost 2 yrs I have wild type and its not in my heart yet and was told it may not get there

I also have the Wild Type with no cardiac involvement. I am also on Diflusinal since it's the only medicine that works for us rare ones. My amyloidosis check ups have stated that I have stabilized. I have spinal stenosis, bilateral neuropathy in both my legs and hands. I just had a spinal cord stimulator installed a month ago and it has helped immensely with the pain. I have been going to the Boston University Amyloidosis Center for the last three years yearly. I finally asked what stage I was in and what life span was. I was told that the Diflusinal was working and that because I had no cardiac involvement I was not in any stage and that I would probably never be in a stage.

Hey Peter
Good morning
Other symptoms, had bilateral carpal tunnel release bad lower back and tired easily. No real group of experts in Milwaukee, So I'm on my own to figure out what to do next? Do have a good Cardio doctor, he checked my heart out. Prescribed Diflunisal and a Green tea extract EGCG. And see me in a year.