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This exchange is getting more like a PM, where we should probably continue.
I don't really know how to get medical professionals to move faster, other than via emergency departments, which you will want to avoid if possible. You should have a local doctor to take over your case, and follow up on the findings you have. At present the problem is not that your doctors are taking things easy, it is that you are in limbo where no one is responsible for what happens next. Some professional has to be responsible for the treatments you need.
Once you have that new doctor I'd say IVIG is a reasonable intervention with limited risk. It may not work, but it is unlikely to precipitate a crisis. If it fails, you still have the option of plasmaphaeresis, even before you get to B-cell depletion experiments. (I don't think your concerns about exchanging "good plasma" are relevant if the preceding treatment did not produce improvement. However, if you feel strongly about it you might go directly for plasmaphaeresis.) If a doctor who is responsible for you feels you are still sinking after trying these standard interventions, then there is a good case to be made for quasi-experimental treatment when the alternative is grim.
This is what happened in the case of Rebecca2z. She has a diagnosis of EDS, but I don't think that played a major role in the decision to try Rituximab. It was just that her condition was bad and deteriorating, and her doctors were out of good traditional options. Since patients who had similar conditions had improved, and there were published reports of improvement, and no other options were promising, this was a typical justification for off-label quasi-experimental use of an existing approved medication. Her life was at risk, she was aware of the risks, and the option of doing nothing was unacceptable.
Don't worry about answering here, I know this is very specific and probably not helpful for anyone else. I really appreciate all of the feedback that you have already given me.