The Professional Patient

I haven't been around for a while. I can't remember everything that's happened, so I'll pick up like I never left. I saw a few new doctors since last post, I know that. The psychologist that I was sent to as part of my disability claim told me that there's more in-depth testing they can do to determine exactly what kind of memory loss a person has, so I called up my old psychiatrist to inquire about getting such tests... turns out, my old psychiatrist is gone. No big loss, he looked like Bobby Flay and he could never remember anything about me. He also gave me Adderall for a misdiagnosed case of ADHD when I was trying to get help for Bulimia, so he probably wasn't at the top of his game anyway. He's been replaced by a German guy with a very impressive pedigree. I was excited to see him. His education and his background made him seem like the answer to my prayers. My goal has always been to get the correct answer, even if it's a shitty answer.

I wasn't wrong about him. He was lovely, caring, and rode the fine line between comfort and bullshit quite nicely. He thinks I have something neuro-immuno going on... I was (and for the most part still am) unsure of what that means exactly, but it seems to be a different kind of classification for some neurodegenerative diseases. It felt good to hear someone else say that I've been failed by the majority of my doctors. He wasn't rude about it, but he acknowledged that doctors aren't perfect and my case isn't an easy one. The bright side? In Germany, he says, I would be a professional patient... I would be paid to visit doctors and be studied. So I guess when all my other options are exhausted, I can move across the pond. I do like sauerkraut :)

Anyway, he sent me to see a friend of his, an endocrinologist, because he believes that he's the best at deciphering endocrine levels and relating them to neurological conditions. I went, I gave blood, I was examined by the endocrinologist and his resident. For most of the appointment, we discussed how certain hormone levels could be causing my neuro-cardiogenic symptoms to flare and maybe that was being mistaken for a separate neurological problem. But then I explained my tremors. My loss of control in my hands. My medical leave from school because I can't hold my knife. How it sometimes appears that I'm throwing something, when it's really involuntary movement. And I showed him my tremors, because they're present 100% of the time, even when my hands are not in use. He looked at my hands, looked at me, and said "That looks like intention tremors... that... is neurodegenerative." He asked the resident if he agreed, and indeed he did. The tone turned somber, and we ended the exam. I don't have the results of the blood work that they did yet, but I'm not hopeful that it will show anything. Being hopeful after an appointment is a luxury I no longer have.

The German doctor also sent me to have more memory testing. I bombed something called incidental memory. I was excited to learn that there was maybe a new piece of the puzzle to put into place, but also disappointed when I learned that it involves a part of the brain I haven't really previously considered suspect. I've pretty much convinced myself that all of my problems are related to my brain stem or cerebellum. This particular kind of memory involves the temporal lobe. In the grand scheme of things, I know it doesn't matter... neurodegenerative is neurodegenerative, no matter where in the brain it originates. At the same time, I guess I stupidly thought that if all the problems (even ones involving irreparable damage) were confined to one area, then maybe there was a way to spot-treat or prevent worsening of symptoms. It was stupid wishful thinking without any scientific basis at all. The doctor that did the memory testing said that he'll forward the results to the German, because he certainly doesn't know what to do with me. He agrees that my issues are caused by a medical problem, not a psychiatric problem at all. He did ask me about depression and anxiety. I explained that I'm not depressed at all, though I'm anxious about my medical problems. I also explained that my personality has changed because I've adapted my behavior to live with my medical problems. My memory sucks and my aphasia is so bad that I avoid any situation where I'll have to act "off the cuff", so to speak... because I'm unpredictable at best and embarrassing at worst. I never know what word will come out, and I'm constantly afraid that my cognitive dysfunction will put me in a dangerous or uncomfortable situation. I imagine he's going to pass all of that info along to the German as well. I don't mind, because I've probably already told him myself, but I don't want to have unnecessary pills forced on me. I'd rather they just find a solution to the whole problem before they give me something with a whole booklet of side effects. Every doctor I see is amazed that I'm only on two prescription pills (not counting Vitamin D). I'm holding off as long as I can, but eventually I'll give in and take whatever they give me. The worse I get, the more detached I'm going to feel, and then I'll want the meds as a buffer between my mind and whatever part of my brain is still functioning at that point.

That's all of my update for now. I go back to see the German on the 21st. Sorry this wasn't more cheerful.