Well, looks like paraneoplastic syndrome has been ruled out - no sign of cancer in the CT scans or the PSA test, or any of the other blood work ordered by the oncologist. Some relief, but more questions now. Curiouser and curiouser!
I've found some interesting research articles on autoimmune encephalopathies....but it all seems pretty squishy - many novel forms of it associated with antibodies, and overlap of syndromes. No clear definition of diagnosis. We don't see the neurologist again til April, and I know he's an expert in his field. I worry about questioning too much and offending him. While the study of these disorders has revealed how antibodies might alter memory, behavior, and cognition, the more definitive symptoms seem to be headache, seizures, and sleep dysfunction. None of these three apply to Dave. He has never been a person to have headaches. He seems to sleep solidly at least nine hours at night, and dozes during the day. He's had two seizures in his life - and they were while he was in the emergency room with head trauma after a fall on ice over three years ago - he had those within minutes of each other, and hasn't had any since, despite other falls. AAARRRRGHH! Why can't anything be clear and easy? Feels like a blurry picture right now, like a Polaroid picture not developing like it's supposed to.
Does it really matter what it is? FTD? Autoimmune encephalopathy? Or something else? One - I can hardly get the words "autoimmune encephalopathy" out - it's a tongue twister. Two - AE is relatively "new" - progression? prognosis? Can't locate much on it, because onset seems to be significant enough that it is caught early and reversed.. Three - THE SYMPTOMS DON'T SEEM TO LINE UP WITH DAVE'S SYMPTOMS! Perhaps Dave's progression has not been as fast as some, obviously changing the prognosis a little bit - Dave has always been atypical - I wouldn't have married him if he wasn't! But FTD varies a lot. I know that to be true. I also know that beginning fifteen years ago, he started changing. Loss of filter; loss of empathy; unusual behaviors; loss of interest in others; loss of job after job due to gradual cognitive decline and loss of executive function. He hasn't been able to smell anything for years - his gait is slow and shuffling. The last year, he's lost a lot of memories and gotten more snappy with every one. The long term memory loss is the most painful to see, and short term is frustrating. In the three and a half years since we finally got a diagnosis, there has been decline. Nothing major - no incontinence, nothing big and obvious, but subtle and progressive. So what's next?
I'll continue to research, continue to wait for the other shoe to drop - because I know it will happen one day. Continue to try to balance this life we are living. This disease is beginning to take its toll on me - the last few months at work I feel I'm making mistakes, forgetting things - it's CRAZY! I don't make mistakes! I'm feeling more trapped on a daily basis, losing my ability to forge ahead, to be resilient, to distract. Losing myself. Need to snap out of it again. Which I will. Hopefully with spring on its way, and the days getting longer, it will happen naturally without too much effort. Because I'm not sure I have it in me to make the effort. Hopefully planning to go to California in March and see our grandson. Once the dates are firmed up and the tickets paid for, I'm sure I'll find a new pep in my step. And yes, my life is good. Things don't have to be perfect to be wonderful. Right?
