imperfect decisions...

dr pruitt called yesterday. there was no presence of the oligoclonal bands in my spinal fluid that would have confirmed the diagnosis of MS. but, just because it doesn't say that it is MS, that doesn't mean that it confirms that it isn't. i've reached a weird point in the past few days. i want to go on as normal, but i can't. i don't even know what i have. and now i've had two tests (the spinal tap and the visual evoked potential) that have been negative for multiple sclerosis. so then, what the hell do i have? is it MS? is it an MS-like occurrence? is it something else altogether?

these are the things that i think about when i try to fall asleep. i think about what this means for the rest of my life. i think about who i'll become as a result of this disease. i think about how i will be limited as a result of this disease. i still feel afraid. i suppose there is always an element of fear in what we can't know. when this was a tumor, dr neff said i'd have to make "imperfect decisions". dr pruitt said to me when i finally talked to her this morning that we were making an "imperfect decision". in the midst of so much ambiguity, i just want to hear something absolute.

so, after dr p called yesterday, i called back and left a message with her secretary saying that i have a few questions. she called back yesterday evening, of course when i wasn't able to get to the phone. but she called again this morning, at about 8:30. i missed her call originally, but called her right back. i told her that i know that tests can't always confirm or rule out diagnoses, but i have this patient (as in one who is cared for medically, not as in one who is okay with waiting--i am certainly not that) need to put a name to what is going on with me. so here goes...

Clinically Isolated Syndrome (CIS) consistent with demyelination (MS). i have probable laboratory supported evidence which suggests multiple sclerosis, but i've only had a single demyelinating event.

so, while the spinal tap and the evoked potentials did not confirm MS, the MRI and the biopsy did. presenting with seizures. looking like a tumor. good god. makes my head spin. almost literally.

basically, i will probably have another episode within the next year or two, so dr p wants to go ahead with the avonex to better my chances of not having another episode. i should be on the avonex next week. an imperfect decision, but given what we know, it seems like the best one to make. in the meantime, she's going to push up my MRI date (currently scheduled for june 8th) by a week so she can see what is going on, then put me on steroids to lessen the inflamation so i can (hopefully) get my sight back. apparently, the steroids will send my appetite through the roof and i'll get all revved up. um, great?

at least i have a name. at least i had the ambiguity confirmed by someone who has a lot more knowledge than i do. at least i'm going to be doing something about it. somehow all of this doesn't really offer me any relief right now.