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I'm not a doctor, but have you considered the possibility of mercury poisoning?
I attended a talk by John Moore last evening regarding mercury detoxification and he mentioned ALS specifically as a condition he believes is linked to Hg poisoning. I was researching this topic for my some of my own health concerns and my search linked me to your question here. Some of the symptoms you describe above match those of mercurial poisoning. Since the doctors you are working with don't have all the answers, what would it hurt to look into it? He gave us his number in Renton, Washington USA so I'll share it with you, 253.226.4464. Who knows, maybe it will be helpful to someone. Hope you find the help you are looking for. Keep the faith.