Posted by: stephilepsy | February 5, 2011

Doctors vs. Aliens vs. stephilepsy

It was my own fault. It was my own stupid desire to appeal cheerful and humorous at all times, lest I bely the agony that exists beneath the skin, that did it. Also, I should have gone to my neurologist, Marky Mark, right away, bypassing the suspicious eyes of Dr. So What? entirely. But, I didn’t.

In any event, “So, have you ever seen the movie ‘Alien’?” definitely should not have been my opening line.

Oh, and those jokey follow-up questions about whether or not a dissociative state can be confined to a single limb? Those were not helpful either. Especially given that they were coming from a patient linked to not one, hold your applause folks, but two “fake” diseases, fibromyalgia and “chronic” Lyme Disease, respectively.

Still, how the hell was I to know I was having seizures? On ER, when someone has a seizure their eyes roll up in the back of their heads and they flop around like some sort of dying sea creature on the deck of our real estate agent’s boat. Also, they are unconscious. Which sounds awesome.

At the time, however, I was experiencing a sort of intensely horrible (rated number three on the list of most painful things stephilepsy has ever experienced — the stroke falling at number eight or so) burning, tingling, spasming, sensation, that felt as if a creature was trying to claw its way out of the right side of my abdomen. And, being a member of the ever-exalted Generation X, I tied it into a pop culture reference because: a.) that is how we communicate with each other and the world at large; b.) I thought it was funny; and c.) it was an accurate description of what was happening that I hoped would provoke a visceral reaction. Pun intended.

Dr. So What?, upon hearing my descriptions, just stared back at me blankly. I searched her eyes, looking for some sort of some spark, some sort of thread of empathy or emotion or thought, even if it were unrelated to me and had only to do with the dying supermarket nearby, but all I saw was emptiness. Which is fine, I suppose. Professional detachment and all that. Dr. So What? was never mean, she always took my pain seriously, and, when pressed with an issue (I, admittedly, felt too foolish to press her on this), was never dismissive. She just was never very helpful either.

So, being a determined sort of lass, I hit the internet. Web MD said I either had menstrual cramps or had been recently exposed to some sort of toxic chemical. Thanks Web MD! Between the fact that you are basically one giant big pharma ad and your completely useless “symptom checker”, you have ensured that I will I never, ever visit your site again. Good job! Way to go!

After that, I was forced in to the giant swirling vortex of despair that comprises the various web medical messaging boards. Since the sensation was, at this point, confined to my abdomen (it had not yet occurred to me that the numbness in my right arm that always preceded my attacks could be in any way related to what was happening because I am an idiot), I searched for spasms on the right side, or something similar, and was treated to many hysterical posts from people wondering if they had M.S.

“Huh,” I thought to myself. “Woody Allen has an awful lot of free time on his hands.”

The consensus of cooler heads was that these were merely muscle spasms, and, if one were having them regularly, fibromyalgia was a likely explanation. I attempted to accept this, as I had been diagnosed with fibro over 15 years earlier, but it just didn’t sit right. My muscle spasms usually feel as is someone has shoved a knife into my back and left it there; they’re not some weird burning sensation working down my torso, lasting for a couple of minutes, that have me screaming as if I’m in the fiery pits of hell. But, okay. Muscle spasms. Has anyone else got a better explanation? No.

Unfortunately, they got worse. As the months passed, my attacks became more frequent, and, instead of being confined to my stomach, they worked their way up my right arm, sometimes across my face, down my chest, then my torso, and finally down through my right leg. Afterward, I’d feel totally out of it and unsteady (to the point where I once accidentally took a shower with my underwear still on) and I always had weird thoughts about my right (near-useless since the stroke) arm.

“Is this really my arm? Maybe I’m just dreaming it. Maybe someone else is dreaming it. Why is it here? What am I supposed to do with it?”

Eventually it finally dawned on me that all this was occurring on the side of my body most profoundly affected by the stroke. I did some research on seizure disorders, wondering if what I was experiencing could be some sort of epileptic fit, but no description I found matched what I felt. Unable to take it any more, I made an appointment with Marky Mark, the neurologist who had performed the surgery that had saved my life. It took him less than three minutes to diagnose me. He explained that I was having simple parietal lobe seizures (a rare type of epilepsy, which explained my inability to scan Wikipedia’s Seizures entry, and find symptoms that matched my own), likely caused by a scar or lesion left on my brain by the stroke, and that I shouldn’t worry too much about them as the fact that I had not had any grand mal seizures meant my brain was working fine and the damage was localized. He gave me a prescription and sent me on my way.

But, being a glutton for punishment, I had one last round regarding the seizures with Dr. So What? a few days before that fateful appointment with Marky Mark. If you are wealthy and have the free time, I highly recommend looking up the symptoms to parietal lobe somatosensory seizures and presenting them to your local, average, suburban, internist as it is both entertaining and offers and intriguing glimpse into the state of the Greatest Health Care in the World.

I, again, never being one to learn from my mistakes, opened with the bit about “Alien”. Naturally, I got the same blank stare.

I pressed onward. I went into detail about how it was confined to the right side of my body, and that it seemed to start in my hand, move up to my face, an the work down the right side of my body. I boldly theorized that it was related to my stroke, as the sensations were confined to my right side and, in addition to feeling burny and spasmy, had an electrical quality to them.

Her eyes darkened and narrowed.

“You have WiFi-itis,” they seemed to say. “I can alleviate your symptoms by calling your cable company.”

I then went on to discuss my feelings about my arm afterwards. For those of you playing at home, don’t forget to ask your new doctor friend whether or not fugue states can be confined to a single body part, ideally a limb. It is important to keep in mind, however, that you regard this phenomenon with puzzlement, not hostility. You don’t want to get yourself locked up in the local county psych ward. That would not be good.

At this point she just looked hopelessly lost.

“I have an appointment with my neurologist this week,” I said.

“Oh, good,” she said, clearly relieved. She took a deep breath. “Maybe you have a pinched nerve,” she added, helpfully. “He should check you for that.”

The idea that these symptoms were due to a pinched nerve was even sorrier than my theory that I had somehow started having muscle spasms sent by Satan. I am actually the proud owner of not one but two pinched nerves, as it happens. One is located at my elbow, the other at my neck. The reason I know this is an earlier, crueler neurologist put my through a nerve conduction study in 2004. This is a fun test. My advice: unless you think you are genuinely going to die or become paralyzed unless you have it done, I’d skip it. I sincerely hope that whomever invented it tested it on himself. A lot.

Anyway. Poor Dr. So What?. I was difficult, wasn’t I? You tried your best; I gave you a hard time anyway. I’m sorry.

I wish I could say that it all ended there, that I took my pills, the seizures magically went away, and I skipped off into the sunset whistling a jaunty tune. That’s not what happened. That’s just not the way things tend to pan out for me, health-wise. I suspect, for all of our fancy machines, expensive medications, and extortionately high health care costs, that’s not the way things pan out for a lot of people.

The pills have not worked. Other pills I’ve tried have not worked. Instead of having one bad seizure once or twice week, it’s once or twice a day. Plus, I have little ones that seem to flicker between my hand, face, and stomach on a near constant basis. I’ve had an intractable headache that feels just like my stroke headache for about six months now. Everything is terrible.

I went to see the Count, my new neurologist for the second time this week. The first time he actually took the time to listen to what was going on, but, this time he was sort of impatient and dismissive.

I had had and EEG since our last visit. It did not show any seizure spikes. This was not a surprise to me as: a.) my previous EEG had also been negative, and b.) the reading I’ve done seems to suggest that the kind of seizures I have don’t always show up on the test. He then informed me that I wasn’t having full seizures, but simple partial, seizures, likely caused by the the stroke and —

Oh, Really?

Congratulations, Doctor! You have just earned a stephilepsy nickname upgrade (TM)! You are now Count Von Obvious. Seriously, dude. This is our second appointment. I told you this already, last time, during our first appointment. Come on now.

He then hands me a sample for a new drug to take, one called Lamictal. Seeing as that I’m already mistrustful of medications (even more so of ones that docs “just happen” to have lying around), I look it up when I get home. Amongst the many hellish side effects (more common in women then men — misogynistic medication would make a great band name) are awful menstrual cramps. Mine already make me wish I had wish I had never been born. Or I hadn’t woken up from the coma. I’m not too particular about it. Oh, it can also change your eye color. To brown, I’m guessing, but I’m not really sure. This is, of course, assuming you’re not one of the rare few has a weird but potentially fatal reaction in the first few weeks taking the drug where your SKIN FALLS OFF!

I am not making this up.

No. Nope. Not happening. I’m not taking it. I will continue to take the completely ineffective Topamax until our next meeting. I know this means war. I really don’t care. I’ve had it. I reached my Network moment.

I’m as mad as hell and I’m not going to take this any more.

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Responses

  1. Sounds like chronic mercury poisoning to me. Seriously. Google “Andrew Cutler” or visit the yahoo group “Frequent-dose-chelation”.

    Best regards,

    Kelly

    • Amalgam poisoning? That’s from cavity fillings right?
      I’ve actually never had any. Well, I had one cavity on one of my wisdom teeth, but they just yanked it rather than fill it.
      I will look into Dr. Cutler and chelation therapy more closely, though. You’re not the first to have raised the idea of a potential toxin/chronic toxic exposure being at the root of my problems, and it’s actually something I haven’t thought about for a very long time.
      Thanks for sharing your thoughts. I’m always looking for new avenues to persue, so I really, really appreciate it.
      Take care,
      Steph


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