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(My comment is backed by fundamental ignorance.)

Have you tried university/research hospitals? I wonder if it would be worth researching/shopping for such a hospital and get them interested in and committed to finding out what ails you.

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Yes I have. It was a bad experience. I kind of thought I'd be an "interesting case" of sorts for them, but I had to fight even harder to get anyone to listen to me. That's also how I ended up having a useless (and somewhat damaging) surgery.

However I do still feel that there must be some kind of advocate for such cases in big hospitals, but I've never been able to find one.

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