In short, there are some very mild deficits in functioning. My attention fluctuates. My semantic memory is not so great. My cognition speed has slowed. There are moderate to severe impairments in my fine motor skills and grip strength. I suspect the motor skills would be worse if I hadn't taken up knitting and crochet.
I expected most of that. The attention issue makes sense of what I was thinking of as memory problems - if my attention is not steady or as good as it should be on occasion, then obviously I won't encode memory properly at times. It also helps explain my sort of sensory overload in crowded conditions and why I can't really multi-task anymore. The cognitive slowing also makes sense - it takes me longer to do things/comprehend things. I get there in the end, it just takes a bit longer.
In most areas I was "average" which, for me, may indicate some deficits but, as we don't have a full testing range available from prior to my illness, we have to sort of guess. I'm trying not to worry about it too much.
My verbal IQ is still quite high, which is reassuring. It makes the semantic impairment a little more frustrating - constructing what I think to be a nicely flowing sentence with carefully chosen words only to then hit a word that I cannot think of/recall is irritating. I dislike being reduced to saying "that thingie over there" on a regular basis. :P
Regarding the somatoform stuff:
I do test very high for anxiety related to somatic concerns. Very high. Higher than I expected, but I suppose maybe we shouldn't be surprised. Even though I know that what's going on isn't deadly or all that dangerous (at least not in the immediate sense) it is scary. But, the neuropsych people think that this isn't uncomplicated somatoform or conversion disorder. It's far more complicated than that. Instead, it's clear that stress and anxiety play a role in my symptoms and that, in turn, my symptoms play a role in my stress and anxiety. (Take that, Descartes) I already knew this and, in fact, had pointed it out. I feel worse physically when I feel bad emotionally. So, stuff is not "all in my head" nor am I "crazy." Nor can my symptoms be entirely explained by psychological issues. I now feel comfortable in telling anyone who says otherwise that they can suck it. It's also probably worth noting that I took all these tests just a few days before I was due to find out the results of my Huntington's Disease test, so, yeah, I would guess that unless I had been in a coma I would have had some high anxiety levels.
Overall, they feel that some of the attention and cognitive slowing may be due to my anxiety, but they feel that it's more due to a combination of autoimmune disorders, the minor white matter lesions evident in my MRIs, anxiety, and sleep disorders.
So, the plan is to work more on managing stress and anxiety in therapy, which is something we've already been working on. I have already been compensating for the attention issues and cognitive slowing by trying to plan out tasks and have everything for a task together in one place before I get started. Sometimes easier said than done.
As a broader plan, we'll see what the new neurologist has to say when I see her again in January. If she's seeming to take a view of somatoform disorder and the test results as "it's a purely psychological issue" she will be fired.
If she has a more nuanced view after seeing the full report, then we'll see where we go from there. I think I want to be re-evaluated for multiple sclerosis. Even if it means another spinal tap. (Sob.)
I also want to see if we can find someone who specializes in autoimmune related neurological problems.
We are also going to look into a referral to an occupational therapist so that I can be evaluated for driving ability. This is based on the recommendation of the neuropsych people - the cognitive slowing, motor control, and attention issues make me want more data before I attempt to drive again.
With my psych team, we may re-consider trying one of the medications for ADD/ADHD. I've been very hesitant to do this because I've become extremely sensitive to caffeine in the past few years with it increasing tremors and involuntary movements, my heart rate is typically very high, and I had a bad experience with Provigil. So, trying another stimulant is something I'm a bit wary about. However, if I can try it in a carefully controlled situation I think it might be worth it.
In other news, my rheumatology appointment went fairly well. My pulmonary functions tests show borderline mild neuromuscular weakness. Yet another "minor" test oddity to add to the group. They are starting me on Plaquenil to see if it helps with some of my symptoms. It's also a malaria drug. After the OMG teh malarias scare in 2005 it seems like we've come full circle. I have high hopes for this one helping with my fatigue and pain.
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