famous last words

"i just want to talk. no more tests, no more MRIs. just talk- that's all."

i don't think i have ever heard more famous last words in my 27 years of being on this planet. (well, 24 years if you don't count the "ma ma, da da" phase of a toddler.) the source of this is a neurologist, dr. h-something (honest, i can't pronounce his last name, i'm not being dismissive. hence, i call him dr. Carl) at geisinger's MS clinic. it should ring a bell- i'm frequently at the clinic and have referred to it in earlier postings. dr. Carl became my doctor almost out of default- one of those chain of events things. here are those supporting details...

when i moved to lewisburg back in march, we set about trying to find a neurologist who specialized in ms. we found out that geisinger had an MS clinic, so assuming they'd have an MS neurologist, we made an appt. my first doctor there was an older gentleman who has been in the department almost all of his practicing years. unfortunately, he didn't prescribe (nor approve of) Tysabri as treatment, and his sub-specialty was Parkinson's and strokes. apparently the clinic's longtime MS neuro had retired recently, and they were still recruiting for the position.

therefore, i wound up in harrisburg, with an MS neuro that not only prescribed Tysabri, but also had MS herself. it was a good enough fit, but after a few months of the lewisburg to harrisburg commute for the 3-4 hour treatment became way too taxing for my physical condition. if you read this post often, you will remember that it was around this time the ms clinic @ geisinger was lobbying for using Tysabri at its infusion center. long story short, i came on board as patient #1, and the prescribing doctor was the newbie, dr. Carl. i asked at least twice if this doctor was going to give me an exam, but was told he wound eventually, and everything was good to go.

when i was taken off Tysabri, dr. Carl wanted to rule out any additional conditions that were making my MS worse, especially Lyme's disease. (apparently blood tests aren't always reliable or conclusive for Lyme's, so the spinal fluid is used as a more reliable marker.) i don't need to go into further details on how horrific the spinal tap experience was, but all in all, the tests came back negative for Lyme's, and no MS specific proteins were was present. this isn't unusual- it is a diagnositc procedure, but presence of the fluid in question can't be used definitively to confirm or exclude MS. it is usually done in cases where diagnosis is unusually difficult and evasive. like i mentioned in the beginning of our "supporting details" section, how i wound up in dr. Carl's care was solely by paperwork dictation.

fast forward to today. while i am "drying out" from Tysabri, i am taking monthly "pulse" treatments of Solu-Medrol to help control my symptoms and help to keep me moving. (for lack of a better phrase.) today was the magic day. as i was led back to "my room" (the nurse affectionately phrased it that), she told me that dr. Carl would be stopping by, and would like to have a word. i had been expecting this, but not today. i wasn't mentally prepared, i was tired from the long weekend and already on edge from a blasting migraine. he came in while we were waiting for the IV team (my veins can be tricky), and asked the usual bullshit questions that some doctors seem to mistake for casual conversation. (key word is most dr. dilling!)

"how are you guys today? holding up okay?" i could have answered with "funny you asked, i was abducted by aliens who performed a partial lobotomy with no sedating medication." and he would have continued with the next question. but get real- i'm an MS patient coming into his office for a course of cortisteroids to be blasted intravaenously into my body. clearly i'm not feeling my best. the conversation went downhill from there, which leads me back to the title of this posting. dr. Carl explained that he was not convinced of MS presence, due to the spinal tap results, and wants to sit down with me for a couple hours to go through his "method" of diagnosis. he then explained that he was fortunate enough to train with the best neurologists in the world, and the process is a tried and true practice that many neuros use.

my whole body began to go on "alert" mode. my mind was racing, my heart was pounding... to be honest, i don't know which was bubbling to the surface- my anger or my hurt feelings. not again, not again. i've spent years fighting for myself, fighting literally for my life to resemble some sort of normalcy. and just when i feel safe with a doctor or nurse who i think is going to help me, the rug is pulled out from beneath me. those years swirled in my head- all the disappointment, pain, disbelief, frustration, denial, sacrifices.

there have been so many doctors to come and go before him, and they were all as different as they could be from one another. but they had one thing in common- there was no doubt that i have MS. don't get me wrong- each may have varied on how severe or mild they concurred my case was, but there was no doubt of its presence. i should know, in addition to my own denial, i had to also calm the fears and address the denial of my parents. between the whole family, i have had at least 5 "second opinions."

the reason there are so many of these doctors isn't that i'm schizophrenic, it is that an MS diagnosis can be tricky. there's not a simple blood test, or a random CT scan, sometimes other conditions can even mimic or hide aspects of the disease. the game is best (and most reliably) played by ruling out the encyclopedia britannica of other possibilities- sort of like that stupid chair game you played in preschool. wait for it, wait for it.... musical chairs, that's it! when the music stops everyone makes a mad dash to a tiny seat. i hated that game- after so many elbows in the face and shoves to the side, i frankly didn't give a damn if my ass was on a chair or on the carpet.

in addition, each player is going to have their own "game day" mentalities- some are aggressive with cortisteroid treatments, other prefer the disease modifying injections. some suggest physical and occupational therapy, others push towards an alternative/holistic approach. but regardless, a combination of the following lead you to an MS diagnosis:

- your medical history (esp. evidence of past signs and symptoms)
- a thorough neurological exam (this part seems stuck in the 50's- you squeeze his fingers, follow the pencil, are poked by safety pins all over your body, walk on your tip toes, bend over and touch your toes, put little pegs back in their appropriate wooden holes, have a light shined in your eye... need i go on?)
- MRIs (magnetic resonance imaging; think being pushed into a tiny tunnel- a claustrophobic's worst nightmare)
- evoked potentials (studies that measure the response of your CNS to specific stimulation- )

long story short, i don't troll the country looking for doctors who necessarily agree with my outlook- it's a combination of being referred to doctors that have more expertise in dealing with the worst of my specific symptoms AND establishing a confidential rapport, feeling like that doctor is listening to my concerns. so far, the only interaction dr. Carl has had with me is 20 minutes during a spinal tap, and we know what a disaster that was. actually, that is a prime example- if this doctor knew me at all, he would have known that the test was not only unnecessary, but cruel to put me through.

he was staring at me, nodding uncomfortably to make up for my lack of response. the room had become 30 degrees, and all the air seemed to have been sucked out of my lungs. i was trying desperately not to cry, thank god i had my celebrity sunglasses on. the light is still torturing me, altho recent eyedrops from dr. beautiful are helping. (again, another thing dr. Carl doesn't know about his patient- the her scarring on the optic nerve from a past case of optic neuritis. ) i managed to stammer out that moving to a different state shouldn't require a completely new confirmation of diagnosis, does he have a habit of doing this to all his new patients?

dr. carl: "while you aren't new to this, you are new to me, and i need to know everything about your condition- both past and present. i need to be completely sure that you have MS before i introduce any medication that has potentially harmful and serious side effects."

tears were starting to prick the insides of my eyeball, i could almost feel the tear slice through my cornea. (kim- do tears go through your cornea?) in a small voice, my confidence shrinking by the second, i reminded him that he has copies of all my records. they should show all of the tests that had been run, and all of the results that point back to MS. if he is looking for a magic cure, or some mystery diagnosis, he isn't going to find it. it's just not fair or necessary to ask me to go through all of this again. i can't do it anymore. i think it is only fair that he actually reads those records before he comes to me with assumptions.

dr. carl: "like i said, i have my own methods that were learned by world renowned ms specialists, and all i'm asking is for 2 hours in a few weeks to go over all of those details."

[note he did not say he would or has read the records.] with the last of my strength, i stated again the doctors who have confirmed the diagnosis- an original neuro that diagnosed the condition, 2 docs @ NIH who confirmed 2nd opinions, a clinical study performed @ NIH over a 3 month period, a nationally known neuro in VA who treated me over 2 years, and a neuro at georgetown- and those are just the ones that come to mind!! with my lip trembling and my hands twisting the cuffs of my sweater into sweaty knots, i just nodded defeatedly. i'm not sure if i can go through this again, i told him honestly. i shouldn't have to.

dr. carl: "well, i'll let you guys hash it over, and if you want to schedule an appt to move forward, just call and let us know your decision. i just want to talk. no more tests, no more MRIs. just talk- that's all."

he got up and left the room, and i turned to face the wall. the tears were flowing quickly now, and i didn't want to give that man the satisfaction of seeing them. since when do doctors not want to perform tests- that statement was practically a joke. i felt utterly defeated. where now? what now? i'm so tired- so, so tired. i cried and cried on the phone to elle this afternoon- i think all the tears i struggled to hold in throughout the SoluMedrol IV burst out. i don't have any fight left in me. this is my life- i'm not just some lab rat who displays unusual results and might make an interesting study to put his name on the neurological map. but you know what? maybe it's not even about me anymore. maybe my life has become an evergrowing charts of lab results, CT scans, MRIs, Xrays, evaluation notes, eye charts, and brain waves that live in a 3 inch stack in the corner of a medical storage facility.

my face time with dr. Carl was at the most 10 minutes. it's kind of hard to imagine how much could happen in 10 minutes. but in only 10 minutes, he destroyed years worth of self confidence and assertion i have had to learn to survive this hell. in only 10 minutes, he placed seeds of doubt in the very existence of challenges i face every single day. in only 10 minutes, my mother was given yet another false hope in a simple answer, a magic cure. in only 10 minutes, he eroded the acceptance of this disease that had taken hours of tearful conversations with the best of friends, not to mention countless dollars in therapy, to achieve.

but worst of all, in only 10 minutes i was back in a cold, sterile doctor's office in VA- a naive 24-year-old trying unsuccessfully to wrap the thin patient robe tightly around herself, shivering against the chill of the steel exam table, fretting over roommate squabbles and a shallow breakup while she waited for a neurologist to reveal a life changing diagnosis on a lightbox.