Hi John

Welcome to Neurotalk (NT) - Sorry to read of your debilitating condition - I hope others here will weigh in and help you to figure out what's going on.

I don't have much experience in the subject of anxiety but I was just reading the interesting article in the thread linked below. I realize you may not have chronic pain but the link to anxiety may be useful to you as a path to research. I don't know if testing of levels of the PACAP peptide transmitter mentioned in the article is readily available in the US but it may be something to look at.

Chronic Pain and Anxiety Linked By Neurotransmitter | Psych Central News

I also started a thread connected to this article with further links to the topic and maybe others with more knowledge will add to the discussion:

Chronic Pain & Anxiety - peptide neurotransmitter link

One thing you mentioned was a shakiness or tremor that you experience. Did your neurologist discuss this or diagnose it as Essential Tremor? Also by any chance are you very tall?

How and why the body/mind behaves in the way it sometimes does can be an ongoing mystery for many. I'm dealing with auto-immune issues for which there is no cure, so having to accept this is my new 'normal' is the only choice I have. All I can say is keep searching for a definitive diagnosis - mine took 10 years of illness before reaching a physical crisis and finally a diagnosis.

You're obviously capable of research and I'd encourage you to think laterally when searching for a possible diagnosis. Don't bombard the medical professionals with info - eliminate for yourself any probable causes and only discuss those that have a reasonable viability.

All the best for finding a way to manage your condition and move forward with your life.