I had my monthly neuro appointment today and instead of being scheduled for my 2-3 day in-patient stay at the hospital as we were planning, NL came in and said he'd been thinking about me since shortly after I left last month. Something occurred to him suddenly and it's stuck on his mind; what he thinks has been going on for the last year and a half is completely different than the route we have been approaching, to say the least. It was a surprise, definitely made me raise my eyebrows and my jaw drop, but after stopping and staring at him for God knows how long, I think he could very well be right. What he is saying seems to make sense.
What I have been experiencing have absolutely been presenting as one thing, but it suddenly occurred to him that given the extent of damage to my brain stem from all the surgeries and the progressive scar tissue that is growing like a cancer in my brain, my body is only acting/presenting like this disorder every day. The key has been in something I have, ironically, said in the past to friends before, as it's been explained to me: the reason anti-seizures haven't been working is that I don't actually have a seizure disorder, since the seizures technically seem to be caused by the scarring.
We had no idea just how close with that statement we were with that statement. There is potential now after a year and a half of this keeping me hiding out, of finding the answer. I'm being scheduled to go stay for my testing in a couple weeks. If it's positive, there is no cure, since the problem still will be an unusual variety in that for me, it'll have been caused by my brain stem difficulties. There will be a lot of medications to try to control it, which isn't great, but it's a start.
And a diagnosis arms me with knowledge, which makes me feel stronger and more in control, even if the truth is that it is more in control over me...but shh, it doesn't have to know that any more after I at least try to be in charge of something in my body.