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Date Posted: 15:58:24 09/27/00 Wed
Author: Kira
Subject: Kira's Letter of introduction
In reply to: Limboland 's message, "Letters of introduction" on 17:01:48 05/26/00 Fri

Hi. I like the idea of a message board for limbolanders. It makes me feel a lot less crazy and a lot less alone to know that there are other people going through this, too. Not that I would wish this whole ordeal on anyone...

I'm 21 years old and started having symptoms this past July. Numbness and tingling, predominantly left-sided, though my right hand and right foot are occasionally affected. Then came the vomiting... every time I ate, and sometimes for other "stupid" things, like brushing my teeth or taking a drink of soda. That lasted a month or so (until they got my stomach drugs figured out), and now I'm dealing with the after-effects of the stomach stuff (probable ulcer and I have to get endoscopy next if that's not gone when I see the Dr. next Thurs.). I lost 17 lbs from the vomiting. Then there were the headaches, too... "worst headache of my life" kind of headaches. They cause neck and back pain sometimes, too... pressure, but with an edge to it, if that makes sense. Still get those. My hands have been acting weird lately... I'll find them in strange positions, or I'll will them to do things and they'll sort of half do whatever it is. My eyes bother me from time to time. Blurred vision, sometimes double vision (has anyone heard of vertical double vision? am I just crazy or is that really happening?), and lights do strange things when it is otherwise dark (store signs and street lights and headlights and stuff). If I look up, my eyes do this funny thing where they seem to twitch all over the place uncontrollably until I make them look down again or until they decide to stop. My walk has become "clompier" and somewhat less coordinated recently. I had some strange menstrual irregularities earlier this summer (won't go into the gory details). And so on and so on. You get the picture, I'm sure.

I've had a bunch of tests... all the usual, the stuff you guys have probably all gone through or will soon go through. I had one and a half spinal taps (long story), brain MRI with and without contrast, EMG/NCS studies, bloodwork for heavy metals and sed rates and Lyme's (three times) and electrolytes and liver and kidney function and diabetes and thyroid levels and blood cell counts and differentials and so on and so forth. I had my urine checked for heavy metals and microbiology and chemistry and pregnancy and god-knows-what-else. Lots of neuro exams by residents, interns, med students, and attendings alike. An EKG. Things turn up on the neuro exam, but not on any tests (only minor abnormalities in a few places, like slightly elevated opening pressure in the LP, ketones in my urine from not eating, slightly elevated protein in my CSF relative to my blood, etc).

This, of course, means that I'm "fine," or "crazy," or something. Even though today I screwed up our experiment in Bact. lab today because my stupid hands weren't working right and I knocked the pellet off of the wall of the tube and my lab partner discarded it with the supernatant, so we had to sit and spend all of this time trying to salvage the DNA we'd lost, and I have to go back tomorrow to try and fix it. Even though I get happy when my symptoms go away and think "finally this is coming to an end!" and then they come back the next morning, plain as day and scary.

Limboland for me can be summed up as three distinct emotions: frustration, self-doubt/ guilt, and fear.


This is from the song that's playing right now (Ani DiFranco's "Going Down"). I thought it kind of fit, particularly this part.

"you can't get through it... you can't get over it... can't get around...
it's like being in a dream... you open your mouth to scream... and you won't make a sound...
you can't believe your eyes... you don't believe your ears... you don't believe your friends... you don't believe you're here...
and you're not going to throw it...
you are going down..."

Best,

Kira

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