This has got to be the lowest day of my life. I’m so depressed that I can’t even speak. But I can write. Please forgive the following:
Since pretty much the beginning of the year, I’ve been anticipating this day. The day I finally get set up with The Best Goddamn Neurologist in Virginia. At least, according to the neurologist who referred me. He pumped this guy up to be like the Wizard of Oz, and like a silly little Dorothy, I allowed myself to believe that he would know what’s wrong with me and be able to fix things.
In preparation of this visit, I spent hundreds of dollars and many work-hours enduring sundry medical tests…most of which seemed far-fetched or redundant. I got tested for Wilson’s disease through bloodwork and an expensive opthamologist visit. Even though I had told my neurologist that I’ve been screened for it twice in the past five years. I got tested for PANDAS strep antibodies for the second time in a year. I had my ovaries checked for tumors to rule out some type of autoimmune-induced encephalopathy that’s extremely rare and didn’t match my symptomology, but hey, at least I got to look at my ovaries. After much screaming and dragging of feet, I finally got tested for Huntington’s, even though I have no record on either side of my family of anyone developing any movement disorder. I got an EEG. I did everything the neurologist told me to do so that I’d be all set for the Wizard.
He was supposed to tell me the answer I’ve been waiting to hear for over 10 years.
Last evening around this time, all the build-up got to me. I knew today was going to be a rotten day regardless of the outcome. I called my mother to wish her a happy birthday, and when she asked how I was doing, I said I “could be better, but it will be okay.” See, I didn’t want to bum her out on her birthday, but I guess I did want to talk about things. I needed her to stop what she was doing, remember that her daughter has a Major Doctor’s Appointment that May Change Her Life Forever, figure out that perhaps I’m a little scared, and then provide some comforting words. But she didn’t remember. She doesn’t know my life. I had to remind her about my situation. And then she casually wished me good luck and told me she had to run to Bible Study class. Love you. Bye.
I don’t usually break into spontaneous sobs, but I did. The kind that don’t make a lot of noise because the abyss of wordless pain won’t allow you to scream out the way you need to.
I thought about calling my sister. But I knew I would bum her out too, crying so uncontrollably and not even able to articulate why. So I spared her.
The urge to hurt myself swelled as the crying continued, so I put in a call to my therapist. But I hung up after three rings, remembering that she’s on vacation. Plus, I knew she couldn’t help me either. No one can help me except myself.
So I dried my tears and tried to think about the best way of preparing for today, so that the doctor would have all the information he would need and I would be the most helpful patient I can be. I wrote out my symptom history in narrative form, with an approximate timeline of my movement problem’s progression. When I was finished I was glad I had done it. It helped to organize my thoughts. So even if the doctor didn’t have time to read what I had written, I’d still have a “script” to work from.
Flash forward to my appointment with him, this morning. He was a very nice man. He gave me a very thorough interview, asking me good questions, at least acting like he was listening. His physical evaluation didn’t last as long, but it was familiar and thorough. Walk up and down the hallway, normally then on tippy-toe and then on heels. I guess I did okay. I don’t know. Tandem gait. I couldn’t do it, but I know I gave it my best shot (he gave me at least three stabs at it). I failed all variations of the Romberg, which was also no surprise. I fell backwards on the “pull you backwards” test–a new one to me. He said he detected a tiny tremor in my outstretched hands, but I didn’t notice it. I guess all my reflexes were normal.
I sat down in the chair when he was through and thought to myself, “Well, this is it, I guess.” There was some relief in this anticipation. Finally I can stop “looking” and start “treating”. Whatever “it” is. But the Wizard, as nice as he was, couldn’t tell me anything other than I have some “choreic” movements. Why? Because he didn’t have any of the test results. Even though I had called the referring neurologist’s office and asked that everything be faxed over to him. Even though I told him that none of the tests had come back positive (I had checked prior to our meeting). He said he didn’t want to go based on heresay. He wanted to see for himself.
He also said he wanted me to get tested for kinda-sorta Huntington’s diseases…which don’t show up on the standard test. Because I could have type 1, type 2, type 3…and type 2 is most common in African Americans, donchaknow. Even though none of my parents or relatives have it, somehow me being black means I’m predisposed to having received a spontaneous mutation for a type 2 variant. That’s not what he said, but that’s the only inference I can take away from him telling me that little tidbit of racial epidemiology. And it’s bullshit. I wanted to remind him that I do have a doctorate in biology, that I did have to pass a comprehensive examination involving genetics. But I kept my mouth shut.
He kept going on and on about Huntington’s and all the subtypes, like I’m supposed to find all of it interesting. He only mentioned Parkinson’s once–to downplay the likelihood that I have it. I didn’t say anything though. I didn’t want to be “difficult” or come across as a self-diagnoser. He asked if I have sickle cell anemia multiple times because sometimes that can cause motor problems, donchaknow. I told him repeatedly that neither I or anyone else in my family has sickle cell–a genetic disorder just like Huntington’s. And then I suddenly felt like The African-American Patient. “Let’s just think of all the ‘black’ diseases and ask if she’s ever been tested for them. Yeah, that sounds good.” 
So…I’ve spent the last three months all jeeped up about getting a diagnosis from the expert. Finally, no more tests. Just sober answers and a game plan for how to treat it. Instead, I get a handshake and assurances that he will get back to me as soon as he gets all my test results. Those test results for non-existent teratomas and copper rings in the eyes and strep antibodies and brain tumors (oh yeah, I’ve had two brain MRIs in the past five years. Both perfectly normal). And yet I can’t be angry at him because he’s just trying to cautious. He didn’t get all the facts. He needs the facts.
Not getting an answer after all this time and energe was my worse nightmare. and it was the reason I fell apart yesterday. I should have been prepared for it, but no. I feel like crap.
I can only be angry at myself for not making 100% sure that the office had faxed in everything. Even though the neurologist’s assistant sends all her calls to voice mail and never talks to you directly, I still should have been more assertive. I should have called her every day last week to make sure the doctor had everything, absolutely everything, he needed to make a diagnosis. I should have disregarded her stupid recorded instructions not to leave multiple messages. If she won’t return a phone call, how am I supposed to know she’s actually done anything? So I should have been more assertive. I should have worked harder at making everything go right. But I failed at this. This is all my fault.
I’m never going to find an answer because there is no answer. I can get tested for all the Huntington’d variants and there will always be another test left that the doctor can use to keep from having to do any diagnostic work. Maybe I’m just a hysterical nutcase who needs to leave everyone alone now. Maybe I’d be able to buy a house and not be such a loser if I hadn’t spent so much money this year trying to be a good patient.
I want to die but I don’t want to hurt anyone.
