So have been mine for many years.

The (totally useless) muscle biopsy my neurologist insisted on (and I eventually agreed, when he said he has no way to know how to treat me without it) was the last straw that pushed me from having "respiratory insufficiency" to having "recurrent acute respiratory failure" requiring respiratory support.

Medicine is a clinical profession, not a fishing expedition of more and more tests.

Diagnostic categories and tests are only tools that help physicians achieve the true goal-making their patient's life better and longer.

medications and therapeutic interventions are always a two sided sword, and therefore you want to be on the firmest ground when prescribing (or taking them).

Find a neurologist who takes you seriously, wants to do every thing possible to make you better, someone who can listen and think (out of the box, if need be), and not 'rule out" far fetched diagnosis by various tests.

It's a bad sign, if you feel that talking honestly with your physician about your thoughts and concerns will lead to him being offended and not wanting to help. A physician-patient relationship is about being able to talk about everything and being ready to explore everything that may help.
And this is even more so, when there is so much uncertainty regarding the diagnosis and optimal management.