so ya wanna be a human guinea pig?

(read the following in a fast-paced, nasal-ey pitch without regard for periods or other grammatical structures):

alrightyyyy folks, step right up to the newest attraction at the Geisinger Medical Center in Central PA. that's right it's the kind of creature you have never seen before, a breakthrough for science and mankind alike. never before this moment has one been observed from within their natural habitat. that's right folks we have it right here, right now. all for the price of.....

possibly contracting progressive multifocal leukoencephalopathy (PML) through a compromised immune system, an opportunistic viral infection of the brain that usually leads to death or severe disability.

yes, you guessed it- i'm talking about the "T" word. the same word that usually sends medical professionals, ms patients, and health insurance representatives scurrying for cover, shielding their eyes with the new york times and turning their iPod headphones up to MAXIMUM. well, i have some great news for everyone- i have been on Tysabri for 6 months and have not died. does anyone have a bullhorn? I'd like to borrow it for a bit while I scale the tower of one liberty place in philly, and exclaim "I, MEG MORGENSEN, HAVE NOT DIED FROM RECEIVING THIS TREATMENT."

don't get me wrong, i completely understand that doctors, hospitals, pharmaceutical giants and health insurance companies have to be extremely careful about these things. after all, they are usually the first to be blamed when a medication goes from bad to worse. so don't worry, i'm not on a soapbox today against the medical society. but i do feel strongly that if you are not being helped by your current treatment, you have the right to fight for one that works better. it is your disease, your body, and your informed decision.

when i first began tysabri, i was at the end of my time in washington, dc, where cutting edge healthcare is the norm. with such facilities as NIH, Georgetown University Hospital, George Washington Hospital, and Washington Hospital Center a mere cab ride away, i had many options on where to receive treatment. unfortunately, that wasn't the case when i moved to Central PA. for the past 4 months, we have been driving to harrisburg for the infusion treatments, an hour and a half commute each way. for me, travel is similar to stuffing your body in a barrel and rolling off one of the niagara falls. extreme comparison, but you get the picture.

although there is a top national hospital, Geisinger Medical Center, with an internal ms clinic, located in nearby danville, there has been a turf war over use of the infusion center. in addition, there is an overall uneasiness in regards to offering the controversial medication. for months, the hospital seemed to be siding with the oncology department, who has control over the infusion center. that mere fact that a debate had ensued over whose healthcare matters more- ms patients or cancer patients- is not only absurd, but seems to go against the ethical practice of medicine itself!

through a long laundry list of credits, the infusion center grudgingly agreed to do a trial phase of providing tysabri. depending on the success and ease of the first patient, they would expand the program to one patient at a time. and YOU are lucky enough to be looking at (ok, reading from) the ms clinic's official tysabri guinea pig. mom & i spent the majority of the afternoon with the nurse practitioner, sharon, and my new MS specialist, dr. carl. (i cannot pronounce his last name due to my lovely ms induced speech slurring, so i asked if i could be a bit informal- he gave his permission!)

besides the pre-tysabri clinical exam (including my favorites- the safety pin and finger to nose exercises!), scheduling upcoming MRIs, visiting the local vampire club (aka getting blood work), and reviewing medication lists, we had to have the "frank PML discussion". this is where i have to look each person in the eyes (the NP, the doc, my mom) and state that i understand there is a chance i could contract PML, and that i am aware that PML is fatal and incurable.

and to be honest, it's easy to get the "it can't happen to me" false sense of security since i have already been on the medication. except the usual nausea, headache, vertigo and minor allergic reactions that are short lived after the first day, there have not been any adverse reactions. but when you have to be completely serious, and say out loud that there is a chance you could, well... die. then it becomes real.

however, i still feel the same way i felt in february when we began this journey. i want to have a life worth living, and until the scientists and researchers cure my disease, this is the only chance i have. and i'm going to take it, risks and all.