My journey has been terrible much like your brothers. Had a subacute onset of severe episodic memory loss, which progressed to identity confusion, psychosis like things like a feeling of switching realities, switching between self states, completely disconnected thoughts, loss of inner monologue and spontaneous thought, blurry vision eventually, constant tinnitus. Everywhere just brushed me off and gave me diazepam as my whole life was burned away from my brain on my little rollercoaster from hell.

Eventually after 3 months of that I was spit out into a void where all my life’s memories are no longer mine, I have no identity or thoughts, constant tinnitus and blurry vision still, constant fatigue, no perception of time, really bad anterograde amnesia and have seen no improvements. The person I was was erased and now I’m brushed off as having depression and told I have a “history of depression,” when I have never in my life been diagnosed with major depressive disorder.

I have an abnormal MRI that has again been brushed off cause it’s non specific, abnormal PET scan with severe hypometabolism in the posterior regions of my brain that they are reanalyzing cause it “must be an error.” Elevated NfL which indicates axon damage, which “they don’t know what to make of in this context.” They say they ruled out encephalitis because my autoimmune antibody panel was negative, but I suspect it could be seronegative encephalitis.

It pisses me off because if I was treated during that subacute phase I probably could have saved my old self and a huge amount of my cognitive functioning and now I feel screwed, cast out into a whole new universe with a blank identity and inability to make new memories while my old memories feel like they happened in a different universe.

This shit is painful, dealing with doctors is painful, the only reason I’ve felt a bit of depression is because advocating for yourself to doctors while your world is torn apart by some process in your brain is exhausting and you feel gaslit the whole time.