I saw my neurologist yesterday. My mom is also in town. These things are actually related.
Though I chose not to publicize it via the blog at the time, they ran a genetic test for Huntington's Disease. Though there is absolutely no family history of anything even vaguely resembling it, it was something that needed to be eliminated as a possibility.
I was, understandably, terrified at first. So, I yelled for my mommy. And she came running. Yay for good mommies.
Over the course of the 3 weeks we had to wait for results, after the initial shock wore off, I was fairly calm - the possibility of HD was scary, but is was also incredibly, incredibly remote.
As I expected, the test came back negative. I will not be turning into a hot bisexual doctor on House or turning into a really awesome folk singer.
The other news, however, is that the very, very preliminary results of my cognitive testing suggest the possibility of a somatoform disorder because I am "concerned about my body and health." I immediately pointed out that I would think it would be natural for me to be concerned about my body and health given that it doesn't freakin' work properly at the moment. Anyway, they want me to seriously consider the possibility. I am less than pleased by this.
One, I considered the possibility 18 months ago when I first started having the major movement issues - I was depressed, I was freaked out over horribleness at work and school, I didn't want to return to that situation. I wondered if my brain was trying to find a way out for me that didn't require me to throw up my hands and say "I quit." While I suppose it is still possible that that is precisely what happened, it doesn't explain why I've had major, increasing issues with fatigue over the course of a decade or why I was having balance problems starting in 2006.
Two, I have been being seen in psych for over a year, partly because of my concerns about a somatoform disorder. I came right out and asked about it and stated my fear that I was, in some way, doing this to myself, however unconsciously. They didn't seem to think so. I've been seen there regularly by a therapist and semi-regularly by a psychiatrist.
Three, I would think that having removed myself from the incredibly stressful situation and improved my mental health would have helped the situation. If anything, while my mental health is remarkably improved, my physical health is the same or slightly worse. Unfortunately, there is very little evidence based medicine to demonstrate what causes somatoform disorders or how to effectively treat them. And, frankly, the minute someone brings up Freud I mostly want to slap them. Or say "he also thought Akhenaten was Moses, so I don't think I'm going to take him seriously, thanks..."
The limited reading I've done about somatoform disorders also suggests that patients diagnosed with it are often really, really freaked out about their health. I'm not so much freaked out. I was when the movement stuff first started happening. Once I figured out that it was just uncomfortable as hell but didn't herald a full seizure or something else that qualified as an emergency, I just find them really damn annoying. Until they're under control I have trouble walking places and doing things with my hands and there is no way I'll get behind the wheel of a car but I really don't think those things count as "panic" but rather as "common sense."
I am vigilant, but who wouldn't be in my situation? I don't think I'm hyper vigilant. I take note of symptoms daily to try to track patterns. I rarely even call my doctors between appointments - if something new/weird happens, I tend to adopt a wait and see approach.
I will be totally honest, too - I'm not comfortable with a somatoform disorder diagnosis because I am afraid of the stigma often associated with it. While some doctors and ordinary people are very understanding and recognize that this isn't a deliberate thing done by the patient to themselves, many, many others are not. I don't want to be written off as having a purely psychological issue. I really don't want that to become a major issue as I go through life if other medical problems occur - I don't want to have to convince people to run tests or actually *believe* me because they see "somatoform disorder" in my notes and immediately decide that it's "all in my head."
In any case, I have a meeting to discuss the full results of the cognitive testing in about 10 days. Hopefully by that time they will have had a more extensive review of the test and my records, and we will have more clarity.
I also managed to talk my way into more diagnostic tests from neurology, including an EMG later today, so we'll see if that shows anything.