I don’t think I can help with your primary question. I will say it’s important to get a formal diagnosis. While you say you’ve had EM for a long time, there are some parts of your story that don’t quite fit with how EM typically presents. When symptoms don’t line up perfectly that makes the certainty of a diagnosis even more important. Another community member of similar age to you, who believed they had EM, mentioned recently they were diagnosed with POTS instead. Make sure the neurologist you plan to see is familiar with EM before you pay $600 for an appointment! When it costs that much, you want to know for certain the doctor is familiar with EM, has diagnosed or treated it before, and that you won’t be wasting your money. Most doctors are unfamiliar with EM. Call the doctor’s office in advance and ask if they’ve treated EM before.
PS: Since you have a chronic illness, you may want to consider a health insurance plan with a low or $0 deductible.
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