Help me please! Like seriously I’m terrified

Ok yall, 27 with Ehlers danlos. Here’s the jist of it and I wanted some guidance I guess?

Few years ago I started l to have trouble focusing on white paper with black font. It was just so bright. I struggled to drive in daylight. My eyes were so tired and dry. Got glasses and it was better for a while. Now double vision the moment I relax my forehead and my right eyelid just falls. I can’t even look up on the right side. The eyelid just closes.

I have had a few ER visits where I just can’t move or walk. Just don’t have the energy. If I manage something it wipes me out for a period of time. I could tell my legs were trying to move but they just weren’t responding quite right. Most recent visit my voice changed and I had trouble breathing with the worst tachycardia I’ve had. They sent me home all times after some saline fluid. I kept what they called “passing out” My breathing was 7 breaths a min but I could feel the sternal rubs and hear them talking. I just couldn’t open my eyes or my mouth to respond. Or move my limbs. It took everything I had to remember my babies to keep fighting

My labs have tested negative for MG, but my right side of my face just falls? The smile is halfway like it can’t quite stretch? And my right eye just always tries to flutter closed. Now it’s just resting halfway open on the iris, and has been for maybe 3 weeks?

I should also note every ER visit has been directly after taking medicine for an infection. They were ciprofloxacin, doxycycline, azithromycin, and clarithromycin. Anyway went to neuro and they said functional neurological disorder. But my forehead relaxing and eye drop is immediate every time and so is the trouble eating and chewing. Guess I’m wondering if should fight this and try to get steroids or stand down? Honestly I’m just scared. It’s scary to feel like I always have something in my throat or that I’m so tired I feel sick.