First published on March 30, 2012 at 4:36 p.m.
The Mystery Illness is now causing multiple doctors, neurologists, pathologists, and more to remark that my case is "incredibly interesting." So interesting, in fact, that they still have no idea what's going on. I just got off the phone with my awesome primary doctor (the one who I feel is really advocating for me) and she said that most of the blood draws they ran on Wednesday have come back negative (I am WAY too used to hearing this type of news). A few still won't be done until Monday but she said what was most "interesting" was my test looking for levels of Inflammation. She told me today that when my PA initially ran it a few weeks ago, I had slightly elevated levels of Inflammation, but back then my levels were at a 16 and apparently anything under 20 is okay. Above 50 is pretty bad news. According to the samples I gave this week, my Inflammation Level is now at a 97. The test doesn't tell you what causes the inflammation, but the pathologists said that whatever-it-was-they-were-looking-at-under-the-microscope (I'm not great with doctor lingo) looked really "interesting" and possibly infectious and/or maybe probably viral in nature. What does this mean? That they need to re-test me for a slew of stuff they already tested me for before... I'm not sure how to explain that, it confuses me, but for example, apparently they tested me for Lyme's Disease THIS certain way, but they did not bother to check for it in This, That, or The Other certain way, so they can no longer totally rule out Lyme's. Same with MS. My MRI came back looking GREAT I was told, but apparently they only MRIed me one certain way and to truly rule out MS they should have MRIed/tested me in these other fives ways too, which they didn't. And when they Spinal Tapped me, they only tested for mono, cancer, MS, Lyme's, and all this other stuff ONE way, but to TRULY rule all of that out, they really should have ran about a dozen extra tests on my spinal fluid. Which they didn't. Not only did they NOT test my spinal fluid in all of these different multitudes of ways, they threw it out already. As for our old friend Guillain–Barré Syndrome? Two neurologists said I had it. Two said I did not. Now? Could go either way, because "interestingly" enough, they (you guessed it) tossed my spinal fluid without running every possible test for it. The only thing she is sure that it is not is meningitis. So, I weakly grin and declare that to be Good News :) Oh! And she is also 100% sure it is NOT stress. So the neurologist who told me I was perfectly healthy and just needed to go find a therapist can officially suck it ♥. These last few days have been pretty rough - I'm frustrated and exhausted. Not having answers is gross. Limbo is not a place I like to be. The words "Mayo" and "Clinic" have been tossed around a bit, but the locals are not quite ready to send me down to The Big Dance. At this point I'm really willing to go anywhere to find some answers. However, in spite of all of this uncertainty there are still positives, and I sort of have to cling to those. Firstly, my spinal headaches seem to have left the building, and this is about the greatest gift ever ♥. Secondly, in the face of all of these re-tests, my doctor is trying really hard to NOT have to have me get another spinal tap. She doesn't want me to have to go through that roller coaster again unless totally necessary, and that is very comforting to me :) The greatest thing of all is that she said that I can try taking "gentle walks," as long as I generally continue to get lots of rest and take it easy. I have really despised all of the sitting and laying down I have had to do lately. It bums me out as much as Not Knowing bums me out. The thought of taking a delicious walk is instantly uplifting. Even if my walk is going to be short and stumbley and accessorized with my sweet ass cane. Maybe I'll dress the part, go find some really Granny-Fabulous looking shawls and bandanas to wrap around my head. I've got some old-timey skirts that could really do the trick ;) For now I'm going to hit the showers, go pick up what is probably my last pay check for quite a while, and then seek out some of my friendsies in an attempt to inject a degree of normalcy into my stagnant routine. Thank you for following my updates, and thank you for all of the encouragement. It is definitely needed now more than ever ♥.
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