Freedom!

Woooohoooo!!!

I have the funny things off my head. I am 100% human again. Phew! Being a cyborg was really starting to bother me. It's very demanding, you know. You're expected to have all these super-human powers, be able to see through metal, that kind of thing, and it's really quite challenging.

Now I am all me again. And you know what the tech said. "I would say most people don't make it three days, and have to get it taken off early." *Most* people. She actually said I did really well, because when she heard I was going to be taking care of a toddler with no help, she didn't think I was even going to make it one day.

I don't feel so wimpy now.

She also said she was sure they had enough data. She said 48 hours should be plenty, especially since I pushed the button over 100 times.

I won't get results until June 28th. So the next two weeks are just look-busy time. Hopefully we are done with the tests and we will have some answers already. Meanwhile, pack pack pack. And try to remember how to ignore it all again (I keep wanting to push a button when my foot tingles). Pay noooo attention to that finger twitching over there.

Back to work.

Wimp

First of all, I couldn't take it anymore and am having my EEG taken off this afternoon. 48 hours versus 72 can't make that much difference. I am so done with this.

Second of all, OW! Damn, some of my "tingling" is starting to freakin' hurt. Hope this stupid test gets us some answers finally. 'Cause I am sooooo over this.

Three DAYS???

Three days really just seems excessive. What kind of data are they going to get in 72 hours that they wouldn't get in 24? They must have plenty of data by now. I've pressed that damn event button 100 times. I've had my "symptoms" more often than that, and in all varieties (I've had the tingling, the electric-shock stuff, the finger twitch). If there is anything happening in my brain to cause these symptoms, I guarantee it has happened in the past 24 hours. So what's the deal with the 72 hours?

Upon Googling "ambulatory EEG", it seems like most times they do it for 24-48 hours. I'm not seeing anything with a 3-day duration. Is my doctor a quack? Or is there really some reason why 3 days is necessary in my case?

Because as far as I'm concerned, I'm going to beg her to take the damn thing off already. I can't do this!!! I can't freakin' do ANYthing with this rig on. And I move in a week! Sorry, docs, but I gotta work! This is not the time to be idle. UGH!

One of my electrodes fell off, so I have to go in in the morning and have it reattached. But I am going to see if I can find my doctor while I'm there and get this thing taken off sooner than Thursday afternoon. I really can't take 48 more hours of this.

Not to mention, I'm already starting to smell funky...

What a royal pain

Not that the EEG hurts. No, it's just so damn annoying. I have this canteen-sized battery pack/recording device I have to carry around with me everywhere, I have to press the damn button everytime I have an "event" which is like all the time, so I'm not sure how useful that is going to be, and I am already feeling greasy and smelly. A little over 48 hours left, UGH.

It's a charming look, ain't it?

This is going to be a long 2 days.

EEG prep, take two

OK, for real this time. Today I'm getting my 72-hour EEG put on. I'm a little nervous about looking like an alien. My cousin called this morning and wanted to stop by today to visit me, and I basically brushed her off. I'm just not sure how weird I'm going to look and how comfortable I'm going to be.

So I washed my hair this morning, and am letting it dry without any product of any kind. Man, am I gonna look like a dandelion.

The finger twitch continues. I guess this is the new "normal." That and feeling sparky all the time. I am getting used to it, but when it starts getting painful like the other night, my acceptance starts to falter.

I am as distracted as possible, however, by the process of moving, and that is a good thing. Hopefully this EEG will yield some answers, and I'll know in about two weeks. Until then, pack pack pack.

And just pray I don't run into anyone I know on the way home from the doctor's today. Will post pictures later.

Hurts

Mostly, all this nerve crap has just been annoying, and, well, unnerving (haha). But it's starting to hurt, and that bugs me more.

Right now the backs of both of my hands are stinging. Like maybe I got stung by a jellyfish. Do you think it's likely that there are jellyfish lurking in my bed? Clearly I need to wash the sheets more often.

It's keeping me awake tonight and that pisses me off, because I really need sleep right now! Got a total of about four broken hours last night, and I'm a zombie. But ow -- damn, it stings.

And of course, my right pinky it twitching away. No cause for alarm, says the doctor. I say, see how you feel when one of your digits starts moving without your knowledge or consent. It's a downright betrayal, I tell you.

My Alien Weekend was postponed. Problem with the equipment (that inspires confidence, doesn't it?). She offered me next weekend, but since my moving process begins next weekend, that wasn't going to work for me. So I'm getting it put on on Monday, and taken off Thursday. So Alien Weekend has become Alien Weekdays. Fun fun fun. All I can say is, my 12 year old better not need any rides home from school... I am not eager to scare children in the carpool line.

So the early part of my week will be housebound. I'll have to think up some good activities for the toddler and I to do together that don't require going out in public. Or sweating. Or playing with my wire hair.

Meanwhile, my poor Grandma had a CT scan this afternoon. She was supposed to have an MRI, but whoops! -- she has a pacemaker. So, no go there. I hope the CT scan is enough. She is so dizzy and has such bad vertigo, she can hardly walk. I hope they figure out what is wrong. At least we can commiserate about what a pain in the ass testing is.

My cheerful attitude is showing some cracks in its thin veneer. This crap better get figured out, and soon. I ain't sleepin' with any jellyfish. Man, that just ain't right.

Quick update: MRI normal

Spoke to the neuro today, and she says the MRI was normal. Wow. Now that's a relief. Basically means we can rule out the scariest options on the list.

I'll have more thoughts on that later, but I need to go get a good night's sleep before three nights of sleeping with a wire-y mesh cap on.

Meanwhile: twitch. Twitch, twitch. The doctor says it's nothing to be alarmed about. Uh-huh.

EEG prep

I got a phonecall this morning from a tech at my neurologist's office about my EEG tomorrow. A few things...

1. I can shampoo my hair, but no mousse or gel or other hairproducts. Boy, I'm going to be *lovely* tomorrow.
2. I have to wear a button-down shirt, since I will not be able to pull anything over the head. That means a button-down shirt all weekend. I'm not actually sure I have enough button down shirts, total. Hmm.
3. They moved my appointment up a bit, so now it's at 2:30. As long as my darling husband can watch the little one, that should be fine, and get me home to the big kid sooner.
4. There aren't many activities I'm restricted from over the weekend. No showering or bathing, obviously, but I can basically go about my business as long as I don't get sweaty. So I can pack and stuff. That's good.
5. I will be keeping a diary of my activities over the weekend. Now, as pure scientific research, I would *love* to get a look at the EEG readings and compare them to my diary. Wouldn't that be fascinating? Find out what the Sunday Times crossword *really* does to my brain...
6. I get to wear a mesh hat! Awesome! I've always wanted a mesh hat with embedded wires. Rockin'.
7. I have to sleep with the recorder under my pillow and, you know, try not to move too much. "You don't want to get the wires wrapped around your neck in your sleep." Gotchya.
8. My mesh cap and electrodes will not, as it turns out, endow me with any superpowers, ESP, or psychic abilities of any kind. Or so they tell you.

So I'm feeling adequately prepped for that. It's gonna be a pain, but, whatever.

In other news, I never got a call back from my neurologist yesterday, so I made another call this morning. If I don't hear anything by afternoon, I'm going to be pissed. The twitch is gone today, but I still want to mention it, and make a desperate plea for her to give me some test results over the phone. The unfortunate thing is, my powers of persuation only work when the person calls me back. Grr.

Twitch

My twitch continues. It's been about 12 hours now, I guess. It seemed to have gone away when I woke up this morning, but it's back, in the exact same place. If I lay my right hand palm-side down on the table, it looks like the right side of my hand, including the pinky, is pulsing in time to my heartbeat. It's very slight, but very distinct at the same time. And it is absolutely rhythmic -- you could keep time to it.

Have a call in to my neuro, just because, you know, it's weird. And I'm feeling like, generally, she should have some sense that things are worsening for me while she ponders all my test results in anticipation of our next follow-up 6/28. I don't actually think that there's going to be anything she can do for me. It's just... weird.

Twitch twitch twitch.

And now for something completely different

Well, here's a new one. I was lying in bed, reading a parenting magazine, and trying to zone out before going to sleep, and all of a sudden I couldn't hear out of my right ear. The absence of sound was startling, and I may have even jumped a little. Then I had a ringing in that ear that lasted about 30 seconds, and when it stopped, I could hear fine again. I thought, "well, that was weird," and went back to my magazine. But my right hand was kind of hurting, and I realized I was having this weird burning/stinging sensation at the base of my right palm. I'm getting so used to this kind of weird nerve input that I was hardly phased. But I still held out my right hand and looked at it. (I do this when I'm having these weird symptoms -- like I can't believe there's actually nothing touching me.) And I noticed my right pinky was moving.

I've never had a tremor or twitch before, but for about the past 20 minutes, my my right pinky has been making small, rhythmic, jerky movements. Try as I might, I can't hold it still. I can move it, but I can't stop it from twitching. And if I try to hold the fingers of my right hand together, the pinky goes drifting off to the side, as though trying to do some kind of Star Trek greeting. This is WAY weird... my body is moving without my conscious control. It's just a little pinky twitch, but it's still pretty damn odd. Meanwhile, still feeling burning/stinging in the base of my palm.

Messed up. I'm calling my neuro tomorrow. This just gets weirder and weirder. And if the MRI hasn't shown anything and it looks like there are going to be more tests ahead, I want to go ahead and schedule them. At this point, waiting another three weeks before even starting on the next round seems like a waste of time.

Now to try to ignore the incredible, self-moving pinky, and get some damn sleep.

Oh, yeah, NOW I remember

Stuff I haven't mentioned to my neurologist because I've either blanked on it completely (hmm, what does THAT say about my brain?) or because it never occurred to me that it might be relevant:

I got two concussions within a few weeks of one another about five years ago. I was working in I.T., and I was underneath someone's desk dealing with wires and whatnot, and raised my head quickly into a sharp piece of metal on the underside of the desk. I saw stars. Had a ridiculous headache, went to the doctor, she said it was a mild concussion and not to worry. A few weeks later, I'm at the *same* client (where I had dropped a firewall on my foot and broken a toe, once upon a time -- that place was cursed), and I'm picking up something off the server room floor, and again, upon rising, bang my head into the metal handle of the server room door. I fell down, was disoriented and confused, and had blood gushing out of the back of my head. It was a dramatic moment, one I'm surprised that I had completely forgotten. But I had totally blocked it from my mind until my husband reminded me of those two incidents the other night. ("Head trauma? Didn't you get those two concussions a few years back?" "Ohhhhh... riiiight...") Anyway, whatever, people bang their heads all the time. But I just had never mentioned it (even when she specifically asked about head trauma) because I just didn't remember.

Another thing I haven't mentioned is my arthritis attack from last December. One day, I woke up and my right ankle felt sprained. I couldn't put weight on it, and I was literally scanning my brain, thinking "how does a person sprain their ankle in their sleep?" I had only been diagnosed with psoriatic arthritis a few months before, so I wasn't used to thinking about it, but I soon realized it must be an arthritis attack. I mean, it happened first thing in the morning, and seemed to get better throughout the day. Classic arthritis. It was bad -- and I mean, limping, horrible-bad, for exactly one week, and then one day I woke up and it was all better. Never thought anything of it, besides, oh, I guess this is what arthritis is like. Except, as far as I can recall, there wasn't actually any swelling in the ankle. And it didn't just hurt, it felt weak. What if that wasn't arthritis?

And here's the other thing about the ankle incident -- something else happened right before that. I had horrible, wrenching, can't-sleep back pain. It was in a very specific area -- in fact, an area that has bothered me in the past -- at an exact point along my spine. Oh it hurt like the dickens. I was so miserable, I went to my internist, and she ordered an x-ray of that spot on my spine (normal), and then prescribed physical therapy. By the time I went to the physical therapy, I was limping badly because of the ankle thing. I had to explain to the PT that the ankle wasn't the reason I was there, it was this spot on my back. I had one session, then it was Christmas, and by the time Christmas was over, my back felt fine and so did my ankle, so I didn't go back. It never once occurred to me that the back thing and the ankle thing could be related. But now I wonder.

One more thing my neuro doesn't know, and this isn't because I forgot to tell her but because it happened just last week and I haven't seen her since. Last Saturday, my left arm went funny on me. It wasn't just the pins and needles, it was achy and felt weak, and I had a hard time lifting it. It felt super heavy and weird. And I was so tired, I couldn't get off the couch. The next day it was fine, but that was different from the tingling I've been experiencing on a day-to-day basis, and it kinda freaked me out.

The last time I saw my neurologist, I told her that my symptoms were about the same. That was only two weeks ago, but I would now have to say that they are getting worse. I've been kinda in denial about it, because I just don't want to think about it and I don't *want* it to be getting worse. But when my mom said to me the other day, "but you have your symptoms so rarely, right? I mean, what's the likelihood that the 72-hour EEG is even going to pick them up?" I realized that the last I had updated her, it really was infrequent. Days would go by with no symptoms. I had three weeks between the first episode of tingling (which lasted 3 days) and the next. Now it is not just every day, but every hour.

I want it to stop.

So when I go back for my next follow-up, and we hopefully have some information from all of these tests, I'm going to make sure to mention all of these things that I forgot. Maybe it's irrelevant. Maybe it won't help with a diagnosis at all. But dammit, I'm going to do everything I can to get some answers on this. Because when it feels like someone's playing a little game of electro-shock therapy with your voodoo doll, you want to find the little sucker and punch his lights out. For the record, I'm still not having any fun.

MRI was a breeze

Phew.

Well, I'm glad that's over. It really was easy. Except for the fact that they were running 30 minutes late, which was just annoying.

I went back and sat in one of those little curtained booths to remove my earrings and necklace, and then they gave me a locker to put my purse and stuff in. Didn't have to change into a paper gown -- bonus! Besides the warning that there was a theoretical possibility that my tattoo might "feel warm" or even "burn," there wasn't much in the way of preparation. [Plus I wasn't worried about the tattoo thing -- I saw that one Busted on Mythbusters.] I hopped up on the table thingy, they gave me some earplugs, instructed me to be very very very still, and in I went.

I was warned about the noise, but it was louder and weirder than I anticipated. More beeping and electronic noise than pure mechanical banging. Amanda had suggested that I think about packing or decorating my new house, but I found trying to think about specific things to actually be more disorienting. I did fine as long as I just listened to the banging, and kind of zoned out on the techno music of it all. I had "symptoms" (never know what to call it) while I was in there... not sure if that's useful or not. But my nerve pain down the front of my right leg was acting up, and both my hands were doing their tingly thing. So, you know, whatever. I was momentarily nervous about the contrast shot (worrying about allergic reaction), but it didn't even sting. Whoop-de-doo.

Now it's just wait for the EEG time. I can't wait to see how well my new haircut goes with a wire helmet.

MRI tomorrow

Tomorrow is my MRI. I am nervous, a little. I know what to expect, I think, and I'm not worried about the actual process. I don't think I will feel claustrophobic or anything. And I think I can deal with weird noises and a stingy shot. It's the results that make me nervous. I think it's a pretty reasonable thing to want your brain to look normal. I was OK with the EEG being abnormal, but it seems to me that on this test, abnormal just ain't good.

I'd like a good, thorough "completely normal" MRI, please. Definitive ruling-out of all scary illnesses. And a decaf skim latte, please, while you're at it.

Thanks.

Pre-EEG haircut? Check.

I was freaking out about having to deal with electrodes and wires along with my very long, very thick hair, so I decided it was time for a little butchering. Or rather, a nice fresh look for summer. Goes great with wires!

I think the haircut was a success. At least my husband likes it, and hey, what else matters? And it makes me feel young and sexy, which is important for any thirty-something woman, but especially when one's body seems to be in revolt.

Meanwhile, I'm feeling very "sparky" today. Like I'm getting mild electrical shocks, in my hands and lower legs. Somewhere, someone made a voodoo doll of me, and they're finding this all highly amusing. I, however, am only mildly amused by the whole thing. In fact, this is getting downright annoying. Quit it already, 'k?

How not to obsess

It seems to me that it's a very easy thing, when faced with an unknown diagnosis, to start to overanalyze every little thing in your body. Is my pulse fast? Is it just hot, or do I have a fever? Does that itch mean anything... besides a mosquito bite?

It's way, way unhealthy. I have seen people with medical problems absolutely retreat into their bodies, paying attention to nothing other than their own bowel habits. My grandmother, for instance. As concerned as I am with her health, it gets boring to listen to.

I'm trying very hard not to become boring. It's just so damn hard not to contemplate one's belly button when -- metaphorically speaking -- one's belly button is sprouting a daisy. I mean, look at that! Isn't that weird? You ever seen a belly button *do* that?

I suppose it makes us feel special, in some weird way, to have some diagnosable thing *wrong* with us. Although, if we need something wrong to make us feel special... well, that's some whacked-out, messed-up stuff right there. Messed up.

So, to avoid contemplating my utterly fascinating belly button, I've decided to distract myself as completely as possible. I fixed up my house and put it on the market. I went house-hunting about a gazillion times. We have now sold and bought houses in the past week or so, and are getting ready to move. Not just down the road, either, but to a whole new area code. Major, major transition. I have spent the morning calling utility companies and newspapers and all those people you have to call... and as a result NOT doing internet medical research. That is a good thing. Nothing good can come of googling "nerve tingling" for the 47th time.

So I've got plenty other things to worry about to keep me from worrying about my weirdo nerves. Except that, while on the phone with the cable company, I had to ask the lady to hold while I tried unsuccessfully to shake the "buzzing" out of my left hand. So.

Obsessed, no. But fully distracted from my "problems"? Um... not quite.

Meanwhile, back at the ranch

In the midst of my tingly fun with my provoked nerves, we're moving! Whee! In... less than three weeks! Thankfully, we have already officially sold our house and bought our new house, so the stress of closings and all that is over. Now we just have to do all the lining-up-utilities stuff (a millions annoying phone calls -- my favorite kind of task!), and, you know, pack. We've already packed 12 boxes, which makes us feel all virtuous and stuff, except that they were the easiest 12 boxes in the house to pack (toss some books in a box; repeat). There is more... oh, much, much more.

I think the worst part about Alien Weekend (which is how I'm referring to the weekend when I get my 72-hour EEG test) will be the fact that with all of my wiring and everything, I will actually have to be packing! So I'll be sweaty and lifting things and the whole nine yards... and not able to take a shower. That's what's really going to suck. For my family more than me, I'm sure. P-U.

I don't know, it's a mystery

So here's the story. About three months ago, I started having these weird pins and needles, as though my foot had fallen asleep. Except it was in my hands and legs, and would happen while I was just going about my business, sometimes for hours at a time. I thought, hmm, that's weird. It lasted for three days, and then seemed to go away. I chalked it up as one of those things.

Then a few weeks later, it happened again, and worse this time. There was a nerve down the front of my right leg that felt... irritated. Sore. Like sciatica, but in the front. And the prickling and pins and needles continued. I called my regular doctor, just because it was so weird, so unlike anything I'd ever experienced. She referred me to a neurologist. I thought for sure it would go away by the time I had the appointment and I would feel like an idiot. But it didn't.

So I went to see the neurologist, Dr. H, and she was very warm and reassuring. She checked me for things like Babinski's reflex, which is a sign of MS, and all of that checked out fine. She said it was unlikely to be anything serious, but she'd get copies of my recent bloodwork from the general doctor, and ordered an EMG, to rule out nerve damage. She warned me that it would be uncomfortable. Ha. Ha ha ha.

So a week or two later I had my EMG. Um, uncomfortable? Try, traumatic. It was awful. Truly, horribly awful. But at my follow-up two weeks later, she told me the good news was, I did not have any nerve damage, the EMG was completely normal. Great! So what the heck is going on here?? Since my symptoms were continuing, we went ahead with the next round of testing -- a ton of blood work and an EEG.

The EEG was a blast compared to the damn nerve test. I actually fell asleep, it was so relaxing. The hyperventilation part was not fun, but other than that is was a cakewalk. As I waited for my next follow-up, the pins and needles crap was getting worse, I was tired of not having answers, and I was getting ready to go in there and demand an MRI just so that I would stop keeping myself up at night worrying about a brain tumor or something.

So I was really pretty surprised when the first thing Dr. H said was "Your EEG was abnormal." Um, say what? Who you callin' abnormal? Of course I was too dazed to get details, so I have no idea what part of it was abnormal or what kind of abnormal it was (making internet research utterly useless, damn!). She just said we could rule out a brain tumor and some other nasty-sounding stuff, and that was reassuring. But she said we can't rule out seizures or epilepsy, or some kind of post-infection inflammation. Seizures?? I've never had a seizure in my life, what the hell? Except that that's what my EEG looks like, apparently. Wacko.

So over the next few weeks I have a few more fun tests to embark on. Over the weekend, I get to collect 24 hours of urine in a jug the size of a wine barrel. Rather optimistic about my output, I must say. Then Monday I have my brain MRI (with and without contrast, which apparently means I get to have some kind of a stingy shot at some point in the process). And next weekend -- ahh, the piece de resistance -- I get to have a 72-hour EEG. Which means they will stick something like 30 electrodes on my head, the wires will dangle down like fetching hair extensions (Dr. H cheerfully asserted, "you'll look like an alien!" like that was a major bonus), and be connected to a Walkman-like thing I will wear on my person. I cannot shower, take a bath, or, obviously, wash my hair. Of course, my hair currently is a thick mane that goes halfway down my back. I simply cannot see dealing with 3 days of unwashed mane *along* with the 30 or so wires, in the middle of June. Um, no thank you. So Saturday I'm getting the locks chopped off in preparation. It was probably time anyway. I have a feeling there's some days I'm looking a bit like an alien even without the wires.