Hey gang. I feel like every time I turn around I'm telling you guys about some crud I'm going through. Surgeries, hospitalizations, the dog transfusion hooplah, the kidney stone, infections, falls and resultant injuries (the retina injury was exciting wasn't it?), blah, blah, blah ... I'm really starting to feel like a huge whiner. :-( So for anyone/everyone else who feels like I'm becoming a huge whiner, please just disregard this post. I just need to get this off my chest because I'm having a really rough couple of days and my stress level has reached that boiling point where sleeping and eating are nigh impossible and venting to "normal" people hasn't really helped.
Yesterday I saw the doc I was going to for my pain issues. She is a neurologist who specializes in ... oh, it's a mess of stuff ... here, I'll copy and paste it from the hospital website: "Neuromuscular disorders; especially, inherited neuropathies (Charcot-Marie-Tooth disorder) and neuronopathies, small fiber neuropathies, and post-transplant neuropathies." First off, before I start my massive e-nervous-breakdown, allow me to say: if you ever need such a specialist, Dr. Victoria Lawson of The Ohio State University Medical Center could not be a better choice, and I say that without reservation. Also, that is, I'm quite certain, the highest recommendation I've ever given of a physician I've ever personally seen since I've been sick with this whole mess. No joke. This woman knows her stuff. I didn't have to explain *anything* technical because she actually knows our dysauto jargon, she also "gets it" (in terms of bedside manner), and I didn't have to suggest (nor beg for) tests or treatments because she was on top of things enough to formulate her own agenda. [The farther along in this process you go, the rarer that seems to become.]
For those interested, here's how to find her for yourself:
http://neurology.osu.edu/neuromuscular/lawson.html
Maybe it was how on top of things she was that threw me for a loop. No, no, it was the stupid safety pin. That's when everything started spinning out of control. Because of my short term memory damage, I'm not often able to recall things this clearly, but emotion has a way of strengthening memory (that's scientific fact, not me waxing poetic about how emotional I was). I believe my exact words were "I of all people should have realized. I send people links about this all the time." I got screened for peripheral neuropathy for the first time ever during my appointment yesterday. Though I've never had the test before myself, through my "work" here, I know all about it. So I knew exactly what the implications were as it unfolded and shock waves went out through my ... my what? My mind? My psyche? I don't know. By the time I realized I had less sensation in my left foot than my right, you could have knocked me down with a toothpick. It only got worse.
After she'd finished testing that Babinski's sign was absent (or plantar reflex was present? whatever ... tickling my feet) with the bottom of her reflex hammer, she put it in the sink and started running water on it. I am, perhaps an idiot because I wondered if my feet were really gross that she had to wash it *right away*, LOL. She was changing its temperature with the water, though. Later, she retrieved the metal instrument, dried it off, and gently touched it on the top of my bare foot and asked about the temperature of it. I felt neither hot nor cold (nor warm nor cool for that matter). I could feel the presence of something contacting my skin, but that's it. Just ... light pressure? ... I guess. I was, and I am not exaggerating even slightly, shocked and horrified at once. Everything felt like it went in slow motion after that. She continued on, I can't remember if it was higher up that leg next or the other foot and then up the legs or what. I think both feet couldn't feel temperature and both legs could and maybe I think, as with the pin sticks, my left leg did "worse" than my right. I want to say my left hand might have been worse too, or maybe I'm imagining that? Everything seemed far away for a minute there ... I really think I was shocked. Like this couldn't be happening to me because I would have KNOWN. I mean, I rambled about as much to her I think, about how could I not KNOW that one side of me felt differently than the other?
It still isn't really computing because I know I feel things. Rationally, I know my denial is stupid because of course neuropathy doesn't translate to complete and total loss of sensation, but my mind wants to say if I feel something then my sensory nerves are OKAY. Why does it really matter? I knew (or strongly suspected, considering my slight abnormality on QSART and worsening symptoms since) that my autonomic small fiber nerves weren't in such great shape. Why be comfortable with that but wig out over sensory small fiber nerves?
At the end of the appointment, she recommended a bunch of tests. A skin biopsy to follow up on the small fiber nerves/neuropathy, a fasting glucose tolerance test, a new EMG to check large fiber (hadn't had one in a while), and some blood labs. The blood labs would include ruling out amyloid (which I vaguely know of but have never been tested for ... don't know a ton about it ... know it would be good to have it come back negative, but for some reason that one isn't concerning me ... don't ask, I have no reasonable explanation) and something with a long name that she spat out quickly and I told her was a new one to me. By way of explanation she said it was a very rare X-linked genetic disease, but it would be good to rule it out just in case. I said fine. I briefly considered asking her to write it down so I could look it up when I got home, and then thought I'd be better off not worrying about it so I didn't.
My curiosity is too strong, and my powers of google-fu are too good. I pieced together the content of one suspicious question she asked me that I figured had to do with the genetic disease (because it wasn't related to any of the symptoms I came to her for even remotely but WAS related to how my father died ... ahem, genetic much?), and added the key word from that to a few other words that were more obvious and the very top hit was the condition she'd mentioned. Turns out it does have an alternate, shorter, MUCH easier to remember name. I suspect she was being kind in hoping that I wouldn't go home and look it up and freak myself out by giving me the long and hard-to-remember name. Blast my google-fu!!
My EMG got scheduled for the crack of dawn this morning, so I had to get up early anyway. I ended up sleeping less than an hour last night. I read too much about the rare disease (1/8 as many people have that as have Narcolepsy with Cataplexy worldwide ... that is really, really rare). The more I think about it, the more I think it is the not knowing that is driving me batty. Not knowing what the results of the biopsy will be, not knowing about this other rare disease, not knowing about the glucose test, not knowing what will come next if all that comes back negative. I do know that if everything comes back negative, I'll have that deflated feeling like somehow my body has failed me or betrayed me; it happens every time I go through a battery of testing and come up "empty-handed." Even if the doctor doesn't act incredulous, I still feel like for as sick and awful as I feel, I "deserve" to have it SHOW in objective terms. Does that make sense? Sometimes even when you know you're being irrational, you still feel things. This is one of those things for me; all negatives on a battery of medical tests feels like an F on a school exam. :-p I KNOW I'm sick, and I know that the docs know it now too, but after so long of being not heard or not believed, I still feel like I need to prove it over and over again. Does that ever end?