@debkl Hi, there! Please do not be offended. I am neither kidding nor trying to play a doctor on TV. But these symptoms I have, with a bunch of others, and I know what causes mine. Maybe it will give some clues. To start off, I would bet that you have some form of a systemic disease of mis-folding proteins these precursors of trouble are called prions. made in the liver, and distributed around the body in the blood. It is inherited from either parent. They live a couple hours, clone themselves a time or two, then die, then deposit their carcases wherever they can fit in the body. There are nearly 2000 formats of this process, including Lupus, Alzheimers, Crohns, LECT2..... Anyway, One that latches on to the shoulder tissues eventually is called Gelsolin. That is mine. It is also called Merotoja's Disease or Finnish Amyloidosis. As each of these dead prions, attaches itself, it attracts others, then forms little tubes filled with water and other stuff. Eventually this deposit damages the ability of the tissue to carry out its functions, whether it is nerve, muscle, fat, skin, bone, tooth, eye, whatever. And it is always fatal after a while. Gelsolin grows very slowly, often not being detected before age 70. It can be detected fairly readily then with a simple assay, SERUM Free Lite Chain (c)BindingsSite(Birmingham UK and Seattle). It measures the Kappa and Lambda proteins in miligrams per serum deciliter (NOT PLASMA!). Mine is about 3.0 mG/dL Your local doctor can order it, but it must be sent to one of the national quality labs for analysis, such as ARUP in Salt Lake City; Quant (Mayo-MN), or Boston Gen. There is a lot more info available at many sites. Amyloidosis.org. Alnylam.com Cleveland Clinic NIH.gov, etc. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl"
Hmm, thank you. Never heard of it, but I will look into it and bring it up at my PE next month.