I had my big fancy consulation with the big fancy movement disorder specialist at Rush today. Everyone was very nice, etc. etc.
The verdict is that there is no sign of a neurological disease or damage. Rather I have what is variously termed a Functional Movement Disorder, Psychogenic Movement Disorder, or Conversion Disorder. I am choosing to use the term Functional Movement Disorder (FMD) for reasons that are probably clear to many of you or will become clear as I explain further. (Incidentally, I have in the past few hours found the website linked to the most useful and informative of the available resources.)
According to the doctor at Rush and most other sources regardless of the name they use, this is a disorder triggered in part by stress in the sense of biological or physiological stress as well as psychosocial factors and probably other predisposing factors. Patients may or may not have co-existing psychological problems like depression or anxiety. It is not something we do to ourselves or that we can consciously control. It is not a personal weakness or character flaw. It's not something I could necessarily prevented or that is in any way my fault. (If it sounds like I'm trying to convince myself as much as explain things, congratulations, you win a virtual cookie.)
As an explanation of what is going on, probably the best comes from the website I linked above. If you think in terms of a computer malfunctioning you usually think of either hardware problems or software problems. Hardware problems in a neurological sense would be things like MS or Parkinson's or head trauma. You can see them and detect them with tests in the same way that you can often see computer hardware problems visually or detect them with diagnostics. Software problems can be more tricky. You can pop open a computer case and look all you like, but if the software is the problem, you aren't going to see jack shit. My problem and the problem of others diagnosed with FMD is more of a software problem. Somewhere my brain and nervous system are sending messed up signals that make me walk funny and my torso do weird things, etc. To take the metaphor a bit further, I think someone tried to install Microsoft Vista in me.
This stuff is fairly straightforward. Well, not really, but we'll pretend it is. I'm willing to run with it as a working theory. I accept that there are no clear signs of "organic" illness. The abnormalities in my MRIs can be explained by age, smoking, and migraines. My movement symptoms don't look like those seen with autoimmune disorders. My cognitive and fatigue and pain issues can be explained via a combination of Chronic Fatigue Syndrome, Undifferentiated Connective Tissue Disease, Hashimoto's thyroiditis, sleep apnea, etc., or by the FMD itself, though given how long the fatigue has been an issue (at least a decade, probably longer) and the positive labs on the other stuff, I'm not inclined to attribute all the fatigue issues to FMD.
I know in the past, as longer term readers or people rummaging in the archives will recall, I have been vocal about having major issues with a diagnosis of somatoform or conversion disorders and variations thereof. I will admit, I am still a bit skeptical. Maybe that's not the proper term. I'm frustrated by the lack of understanding about the disorder, the seeming inability for medicine as a discipline to get a handle on it even to the point of agreeing on terminology and definitions, let alone treatment. There is ongoing debate, tied to deeper issues of philosophy and theory of mind, etc., about whether this is "psychological" or "neurological" or both and what that means. Thus my anger at good old Rene and his stupid ass mind-body dichotomy baggage we're stuck with.
The doctor at Rush feels that it is not merely or purely psychological. My symptoms are no less real for not being caused by something like MS. Recent imaging studies have shown abnormal patterns of brain activation in patients diagnosed with FMD. Coming to accept that this may be the result of a combination of lower-level illness, undefined predisposing factors, and the immense psychosocial stress I was under in the months and years before and during the development of the various symptoms is not an instant cure.
The Rush doctor explained it as an alteration of brain patterns, one that could become permanent, but one that could also, hopefully, be re-patterned back to something approaching normal. Apparently a primary, successful approach is therapy (already doing it) and relaxation techniques (also already doing it) and self-hypnosis (that could have highly entertaining potential - any bets on whether I can convince myself to cluck like a chicken on cue?) According to him the best results in reversal tend to be in the first 5 years since onset. If we date my onset to 2007/8, which is a reasonable assumption, then hopefully we have caught things in time.
Here is where things begin to get tricky, complicated by the confusion over terms, over diagnostic categories (neurology or psych?), the lack of research, the lack of clear understanding of causes, etc. The Rush doctor sounded as though he were confident that treatment would be successful. The sources I've been looking at (all reliable medical stuff, not just random blogs) suggest it isn't that simple. It's a long, challenging process. Many people have recurrences. Some have symptoms that never resolve.
So, I find myself still in a bit of limbo in regard to what I can expect for the future. Obviously, things won't change drastically in the immediate future. The one thing that does seem clear is that treatment is a gradual process often with stops and starts and even the occasional regression. I am hopeful though. And it is an immense relief to have a name even if it does have a whole lot of baggage associated with how we as a society regard mind-body relations and mental or psychological illness, etc., etc.
I am also somewhat conflicted, though less so as the day has gone on. For the past two years I have identified as chronically ill and disabled and for a while I thought that identity had just been pulled away. I suppose this demonstrates just how preoccupied with the movement disorder stuff I have been in that I sort of forgot or discounted the other chronic problems I have going on, problems that are not likely to spontaneously resolve and that will continue to have a major impact on my life.
There is also the issue of psychosocial stress and it's role in all of this. Some of you know the history there. I was in a highly competitive, highly stressful graduate program. On top of that, my first adviser left the university under less than fabulous circumstances just as I was getting ready to take comprehensive exams and propose a dissertation. I wound up losing about a year of time with rescheduling and other fiddling. I then got involved with another project. The first season went wonderfully and I was prepared to work on the materials as part of a dissertation. The second season was, simply put, an utter disaster from a personal standpoint. It's probably best I not go into details but the two months in the field and several months after our return were among the very worst in my life. There is no doubt in my mind that this contributed greatly to the development of my FMD. And so now I'm trying very hard not to get furious about how I was treated and the stupid nonsense that went on not just because it sucked but because, from a certain point of view, it robbed me of 2 years of my life, made me fear my sanity, had me wondering if I had only a few years to live, and well, yeah. Obviously, there's nothing to be gained by apportioning blame. I do have a right to be angry, but it's something I'm going to have to get past. I'm sure it will make things even more complicated, but that's how it is.
Now we're mostly looking toward the future. I'm really hoping I'll be able to drive again or even ride a motorcycle. I would like to be able to work outside the home if I want to. I'd like think more about a teaching certificate or a library science degree. It's highly unlikely I will complete a PhD, especially not at Chicago. There is fairly good evidence that repeated exposure to stress can cause relapses or exacerbate FMD. Even if it didn't, I think I've had enough. I love Egyptology, but I love feeling good about myself and relatively healthy and sane a lot more. If I could wind up teaching history and anthropology as an adjunct at some community college I'd be perfectly happy. And the Etsy/Artfire shop is still a possibility if I can get my butt in gear with production. :P
I still have questions about how long we can anticipate this taking and whether applying for Social Security benefits is something we should consider. I haven't been able to work for 2 years. This diagnosis doesn't mean I suddenly will be able to and treatment is likely to take some time. And having at least some of the income the taxes I paid entitles me to would alleviate some of the psychosocial stress I'm under. It would also make it easier for me to access things like occupational therapy and job re-training or placement.
This isn't the end of the journey by any means, but at least it's a new waypoint and we'll get some new scenery (hopefully). I'm not exactly grateful for all that's happened in the past few years, but there have been some wonderful things that came of it. I learned to appreciate simpler things a lot more. How absolutely wonderful Tom is has been reinforced time and again. I had the chance to learn to craft with crochet and knitting and now spinning and sewing and print-making. I've made some wonderful, fabulous, funny, wise friends I would never have made otherwise. And there's been lots of quality time with Oreo.
The especially good news in all of this is that we aren't tied to Chicago for my treatment. That puts us a little bit closer to the dream of the homestead. And that makes me so happy I get tears in my eyes.