once the follow-up appointment was officially scheduled (which was a process in and of itself, i won't bore you with the details), dad offered to chauffeur and accompany me for the afternoon. i immediately took him up on the offer- not only has mom sat through her fair share of boring waiting rooms and tense doctor appointments (we're talking HOURS of her life she will never get back), but he has us both beat when it comes to keeping his cool in emotional situations. i've been dreading this appointment. dreading in the same way i would wait for my college acceptance results. dreading in the same way i would slam my alarm clock down at 6am on monday mornings. dreading in the same way i avoided Target boy in my apartment complex. i think you get the point.
and i wasn't sure how to prepare- i mean, i've given this "spcheal" (how do you spell "spcheal"? is it an official word?) countless times. but usually off the cuff, and especially not to a doctor that seemed to be biased against my condition. how was i going to remember everything? what if i left out that one time my right ear twitched more than my right? or how i can't pronounce the word "brewery" correctly? (it's a hard word!) in the end, i wound up paging through my binders of medical records (over 250 pages- i know that b/c apparently dr. carl counted them, as he told me more than once during the appointment), almost like i was studying for a midterm. i even wrote down a "timeline" of the past 4 years, so i could be prepared when he asked which things started when, etc.
random insert: strangely enough, i'm listening to a song on Yahoo! jukebox that has a refrain of "punish the monkey" running over and over and over and over... just a small behind-the-scenes peek for you.
so finally the dreaded tuesday arrives, and i'm napping peacefully on the winding road to danville (i am a fantastic car sleeper. maybe i need to go down to the garage when i'm riddle with insomnia. like tonight.) i've been battling some major fatigue lately. it never seems to get better! by the afternoon, my walking is noticeably slower, and i'm sticking close to a chair or sofa. my leg pain has been better with the help of getting back on the fentanyl patch, but due to the exhaustion, i'm having to rely on my cane just as much. (if it's not one thing, it's another!)
and of course my appointment was scheduled in the afternoon, not to mention that getting to the neurology department from the car can be an Olympic feat. (that hospital seriously needs some type of urban planner to redo the parking system.) luckily, they do offer a wheelchair service when you come through the main entrance (that is, if you want to go head to head with the geriatric department.) but since the recent "fued" with the MS clinic folks, i've refused to use it. i know, i know the only person i'm hurting is myself. but a girl's got to keep SOME pride, especially if she's already using a cane that doesn't match her outfit on a daily basis. by the time we got to the 2nd floor, i was exhausted and uncomfortable, not to mention incredibly anxious. (i was had been tempted to take a sedative prior to the trip, but being conscious seemed to be an integral component to our visit.)
dr. carl was very punctual (that won him some points in my book- being on time is a bit of a pet peeve), and overwhelmingly polite. almost too polite. he was clearly nervous (which wasn't helping my nerves) but then i thought, wait, why was he the nervous one? he's supposed to be the doctor that was "trained by the best MS neurologists in the world" (remember, he did stress the world bit.) he was choosing his words incredibly carefully, and seemed to stumble around quite a bit before coming to a point. in fact, he asked "Am I making any sense?" at least twice. i'm not quite sure he should be asking me that question. but before we got too far in conversation alone, he performed a a complete neurological exam.
ok, i'm sorry but i have to laugh at the fact these are supposed to be "complete" neurological exams. the laugh isn't directed towards dr. carl, not at all. it's about how the exam sounds so comprehensive and reputable, when in practice it consists of the following. walking on your tip toes (think DUI-style), sticking out your tongue, smiling, a pencil, a flashlight in your eyes, and a safety pin. i'm sure it's very revealing to a medical professional, but watching as an innocent bystander (or participant!) yields absolutely nothing. the safety pin part is an practically a medieval touch!
with that out of the way, the game of 20 questions began. we talked for an HOUR. part of that could be attributed to my MS induced speech impediments.( i've found that when i'm nervous, or even slightly anxious, they tend to flare up.) i was slurring my words left and right, stuttering completely gracelessly, frequently forgot my place in our conversation, and struggled for the proper words. so i'll knock off 15 minutes, but that still leaves us with 45 minutes- in doctor time, that's almost an entire week! i mean, to get that amount of time exclusively with your physician is almost unheard of!!
i settled back into the extremely hard plastic exam room chairs and looked at him expectantly. he had wanted to explain the items he had "flagged" in his review of my records (this was when he first inserted the "250 page" comment. good for you buddy, isn't that your job??!!) but he cautioned me to "not get upset" and to "let him explain first." he began thumbing through a print out of pages with a crazed look in his eye. (he couldn't find the page, and we sat there in awkward silence for a moment.) ok, i was starting to get nervous. i looked at dad, trying to establish a telepathic connection in advance of this bombshell. he took a deep breath and said... "now that i have spoken to you, and gotten a sense of your history, i think your doctors were correct in their original diagnosis."
silence. i was waiting for the "but"... it didn't come. i looked at Dad. he looked at me. we looked at dr. carl. silence. finally dad spoke and said what i was thinking- "so... does this mean you do think she has MS?" "yes." are you kidding me? all of this drama? all of my incessant worrying? going through the WHOLE story yet again, and all i get is a "yes"? i was primed for battle. i was ready to get demanding, snappy and hysterical. i was there with my dad to defend my honor!
the "but" did finally come- just not in the context we were expecting. apparently there must have been some miscommunication (shocking) between dr. carl and i. he seemed to think i was under the impression i had the worst case of MS ever known to man (err, woman), that i was demanding to be treated aggressively and to pull out all the stops. that isn't the case at all. well, obviously i want a doctor to pull out all the stops, but i don't want to risk my life!! i had gone on Tysabri b/c Betaseron wasn't working, and when my body reacted badly to the Tysabri, we had no other choice but to go off of the treatment. therefore, i needed a new treatment plan. it was actually quite simple in my head. so his whole approach to this was to explain to me he WHY didn't think it was necessary to try other extreme, aggressive (ie risky, toxic) options. AUGH!?!?!?! communication is so overrated.
when we got to this part, he did end up giving me on some info that was new and good to know. therefore it wasn't a complete waste of time. apparently there is a basic theory to MS diagnosis. when someone is diagnosed with MS at an older age, the disease is assumed to advance at a slower course. but when someone is diagnosed with MS at a young age (this is the category i fall into), they expect the disease to progress to a moderate degree of disability in the future. therefore, the option to choose more aggressive treatment is most likely going to come up at that point. since my MS has not progressed rapidly, so far (gee thank you for clarifying that), we should hold out on aggressive treatment and stick to the interferon, disease-modifying injections. (we don't want to use up all our options in the beginning- that's how i took it.) it actually makes a lot of sense-looking at it from a purely education point of view, like they are stats about a person other than myself. it's easier for digest if i take the emotion out of the equation.
so, i still have MS. i can't tell if i was truly thankful for the diagnosis, or i was confusing the emotion with plain ol' relief. it's funny (if by "funny" you mean sick and twisted) to think i would be truly thankful for this disease. but when i weigh it against yet another plight into the vast unknown of medical mystery, i'd rather to stick to what i have now. so when it comes time to do the annual "i'm thankful for..." game at the dinner table tomorrow, i know one thing that will automatically qualify- that this whole MS controversy is OVER WITH.
at least until another doctor comes along...
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