Hi Leo, what am I saying? Hmmm, I’m saying that often I have symptoms and there seems to be a few patterns that guide me down long circuitous paths that take time and when I find something as I did on Inside Edition and until I can find and watch that actual show with pen in hand I would not bet my life that what the said that this woman had was in fact PNES, however that term was used to point out a few things1 the epilepsy is not the only cause of seizure, 2 the whatever it is that she has leads to her not knowing her husband 3 talk about stories that meander with side stories that may or may not be about what this woman has they show a clip from a movie with Drew Barrymore and Adam Sadler in which she would wake up in bed with him and scream because she didn’t recognize her husband, then there’s me trying to say to the group as well as my doctors and they look at me as if to say: “ I have no Idea what you are talking about “ So Leo, it’s not just you who tells me that they don’t know what I’m talking about.
Here I can take this in 2 direction eventually wind up back at the beginning.
I’ll wing it. My VA PCP has argued with me for ten years often telling me that what I’m telling him doesn’t make sense. I don’t know the actual number of times that he’ll test for something and get nothing that he can officially call something that I can write about here. For about three years he couldn’t find a reason for my vision problems sending to to the eye doctors who often said I was 20/20. I was telling him that I was being poisoned by my well water. Things were getting so bad that I hit a kid on a bike with my car. It wasn’t bad but scary. Nothing I told him led him to check the results of his testing. Then he called with the news that I had an incredibly high level of ammonia in my blood. He explained to me that I was an anomaly because the VA policy was to not check for ammonia if liver enzymes were normal. So in spite of him asking to check for ammonia the VA thru his request out. But guess what? He didn’t check to see if the test was done. In stead he depended on the lab contacting him or that a quick scan of my results would have an H that the system would earn him about. After three years of complaining and presenting info, reports, bringing water samples in etc etc He either sent my blood to another lab or called the lab to insist that they check for ammonia and sure enough I was so poisoned that I couldn’t think straight. It took almost a year to get back to normal. Do I have liver damage from that or some other consequence? Who knows.
When my vision started going bad again I was back at the eye doctor. The best feedback I could give them is that stress is triggers headaches vision problems and memory lose as well as dumbness I can’t find words I call people by the wrong name etc. Then it gets better usually from intellectual stimulation, meditation, yoga and work. But not one doctor has taken this seriously enough that I don’t think that I’ve been through this before.
I don’t know what’s wrong Leo but I told both docs that when it happen I experience what seems like a concussion, I have all of the symptoms I mentioned and I get lazy and apathetic. I don’t want to answer the phone and I have a short temper.
I’m giving these guys every detail I can but I’m feeling like the can getting kicked down the road