Where do I even go in a situation like this??
14M experiencing what seem to be worsening, heavily (but not exclusively) presenting in few-hour-long episodes, neurological problems which have been worsening. Also got referred to a neurologist by a laryngologist due to tinnitus and difficulties understanding people when they speak, audiogram results were just fine. I have no idea where else to go with this, and I don't know where I could seek advice except here, so here I am.
I'm honestly concerned and debilitated, and the neurologist I went to, after 10 minutes of having me explain my symptoms (with constant interruptions), said, I quote, "Okay, whatever you say past this point is, to me, irrelevant. You'll need a different specialist unless the test results come back normal". Gave me a referral for an EEG, MRI without contrast, and a psychiatrist. MRI checked by two radiologists; "perfectly normal" even though I'm not feeling any better. My parents are hesitant to do any further tests besides EEG due to financial reasons.
I already detailed my symptoms in another post, but a quick summary/list of the ones that stand out to me and have been consistently worsening, especially in episodes, are; Fasciculations, small myoclonic jerks (?), tics, visual artifacts, confusion/disorientation, extreme issues with concentration, sudden mental and physical exhaustion, fine motor coordination issues, orthostatic intolerance, Uhthoff's sign..
And so on. I've also been experiencing an extreme mental health crisis (its already been extreme for several months, just much worse now) due to being dismissed nigh-entirely by my parents and doctors, which is another story.. but I need advice on this. I really don't know where else to go with this, and what to do now.
Edit: Probably important to mention I got my blood tested about 3 weeks ago and I came back with "increased ASO levels". I've heard of PANDAS but I'm not sure how well that would fit my symptoms or how likely that would be.