@brie87144 I have been thinking your issues a lot. After getting into the shower this morning with my wool socks on because I was deep in thought, I feel I have learned something. That is, there are other places some of us might be able to learn from. I am trying the work through a diagnosis for amyloidosis (probably hATTR or AL of some form). I get the same response. "Send me a message if it gets worse." This is no help at all. But there are organizations that do really want to help if they can figure out how they can. Some of these are the groups which are trying to research, develop, sell the medical supplies and equipment to help us deal with these disorders. Such groups are ALNYLAM Pharmaceuticals, and many others. Some are in the USA, most are not. But I it is good to get on the Internet and start asking questions. And most of these companies know who is working on what, so if you contact ALNYLAM, and they don't have any in-company info, perhaps they might have knowledge or lists of orgs that are working in the area. That is how I got on to Mayo, actually. I was referred years ago by the chief cardiologist at OHSU, who said I was to complicated, so he sent me to someone else who sent me to Dan Parker who gave me the idea to go to Mayo. Now, if you are a normal, educated adult, you will take each piece of info to a doctor you trust, and push that Doc into helping you with the thoughts. These men and women are rare, but they do exist. And sometimes the dX comes slowly. I have been working on mine since I became aware that I have multiple cancers and protein deposits and organ failures, almost 20 years ago. So give some calls to some of these large and small Pharmos. You can also look in clinicaltrials.gov for the names of folks working with your symptoms. Also, think about orgs dealing with your issues. For me, some great help has come from Amyloidosis.org, and from Google.com

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