undiagnosed...

ah, the ongoing saga of the mess in my brain... on thursday afternoon i had my first appointment with a pittsburgh neurologist. i was expecting it to be a hey-here's-my-story-and-here-are-my-records-and-i'm-doing-fine-see-you-in-a-few-months kind of visit. but oh no. nothing like that.

dr. mitchell first asked me my symptoms, so we went through those. and then we talked about the tests i've had done and he looked at my MRI images. then he says, "i don't think you have MS."

this is not cool.

he said that given that my evoked potentials were normal, my CSF (spinal tap) was normal, my exam was normal, presenting symptoms were seizures, and the placement in my brain of the lesion, signs are not pointing to MS. (apparently, he's seen "sixteen thousand" MS patients and none of them have presented with seizures. and lesions typically do not show up in the part of the brain where mine is). also, he didn't see the other two lesions that dr. p said had shown up on the june MRI, and he said that sometimes radiologists don't know what they're looking at.

see, it's like this... i don't entirely trust this guy. it's not that i think he's a bad doctor, but i don't like his ego and i don't appreciate his deprecatory comments toward the other doctors i've seen. jesus, i've seen doctors at PENN! that's a major hospital system--it's not like i was diagnosed at some mom and pop clinic in nowheresville. and i know this guy's specialty is MS and dr. p does more work in neuro-oncology, but that doesn't mean that she's not qualified to treat a patient with MS, nor does it mean that she doesn't know what she's talking about...

his response, when i asked him what we're supposed to do now? "just keep an eye on it."

not acceptable. waiting and seeing is not treatment.

i understand, objectively speaking, why he's rescinding the diagnosis--he doesn't want to treat me for something that he's not positively sure that i have. but now i'm right back in that familiar world of not having a diagnosis and i'm worrying about death and brain tumors. does this mean that i haven't escaped the tumor bullet? dr. mitchell says that tumors do not shrink on their own, and this lesion has definitely gotten smaller, but who is to say that it won't cause the tissue around it to morph into something disastrous?

ugh... i can't think about this right now. i have work to do. i can't think about anything right now because i have work to do.

waiting and seeing.