Special thanks to archivist David Wise for providing me with the primary source material at the end of this post.
The months between my initial appointment with Dr. Van Damme and my diagnosis on April 23, 2004 are largely a blur. I believe I left his cramped, speculum-filled office with a referral to the cleverly-named Neurology Center, conveniently located on the 2100 block of K Street, where I worked. I was assigned to Dr. Wei, an unassuming gentleman who introduced me to the battery of neurological exams I have participated in biannually since then like some sort of frequent, unathletic Olympics. Touch your nose – touch this pen. Does this feel sharp? Stand on one foot (they don’t ask me to do that anymore). Push up with your elbows; don’t let me push down. What number do you see?
He also performed a very simple test – running a blunt, pointed instrument along the bottom of my foot – that I later learned was a sign that something was wrong with my central nervous system. Most people’s toes curl when this is done. My toes flex, making me Babinski positive
Dr. Wei mentioned MS as a possibility but not the onlypossibility. I could have a vitamin B-12 deficiency! Or maybe something else? More testing was necessary – starting with MRIs of my brain, cervical spine (neck), and spine. I faced the MRI with dread. I didn’t ask for drugs since I’m not technically claustrophobic, and I was mostly a brave little toaster. Still, it was tough. Lying still for so long with all of that noise is never fun. Still the worst part for me is the changing room transformation. I have had a lot of MRIs in the past 13 years, and even if I go into the radiology center feeling great and looking fierce, the moment I put on that hospital gown and look in the mirror I feel like a sick person. I remember trying on the “I have a chronic illness” persona that day and finding it drab and ill-fitting. I’m pretty sure I made it through both MRI appointments – they’ll only allow you to spend so much time in the tube on a single day – without tears on site, but I’m positive I began crying the moment Neal picked me up and didn’t stop until we got home.
Dr. Wei brought me back in to review the results. There were lesions on my brain and spine that could mean MS, but he wanted to do more tests. In my frenzied reading I had learned that a spinal tap was sometimes called for and was beyond relieved to be spared that ordeal. Instead I was sent for two evoked response tests
, which involved sticking a bunch of electrodes to my head. Once that was done, I watched a screen with a moving checkboard pattern on it, then wore headphones and listened to tones. Barring the mussing of my hair, these tests are the most pleasant (and trippiest) I’ve experienced.
Then came the waiting. It could have been as little as a week between the final tests and my second follow up, but it felt like YEARS. I still wasn’t sleeping great due to the arm pins and needles; add worries on top of that, and I was a mess. I read lots of articles online about MS, freaked out about what it meant for my long term future but especially the short term, which was certain to be filled with needles. NEEDLES I’D HAVE TO STICK INTO MYSELF! I talked endlessly about it to my nearest and dearest. I remember my father’s trying to encourage me with tales of the Scotts’ less dramatic neurological issues – “I bet there would be plenty of spots on my brain MRI!” he said.
Diagnosis day arrived, and I received the anticipated news. Anticipation did not soften the blow. I nodded numbly as I was told that MS was tough to diagnose with certainty but all signs pointed that way. I took the MS Society brochures I was given, as well as packets about my three injectable treatment options. Yes, I understood I should read them over and call when I’d made my choice. Thank you, Dr. Wei.
I went downstairs to the café on the main floor of the office building, bought a 20oz Coke, and sat on the patio, crying and smoking the Camel Lights I carried then for my ever-more-frequent moments of crisis. This was before I had a cell phone, so it was just me, my grief, and two delicious vices for my first minutes as a person with MS. After a couple of cigarettes, I wiped my eyes and went down the block to my awful job to tell my boss what happened and that I would be leaving for the day. First I wrote the following to nine friends and my immediate family:
Sent: Friday, April 23, 2004 10:21 AM
If you’re receiving this message, then you are amongstthose who have been burdened with the knowledge of my recent medicaladventures. Although I will not likelyleave limbo completely for a while yet, this morningI did receivea “probable MS”diagnosis. Because it’s not the sort of diseaseyou can just do a blood test for, probable is about as certainas it gets in these earlystages.
I’m still processing everything, of course. The next step will be to take a look at the drug options my doctor gave me (for those of you who are medicallyinclined, I’ll give you the nameslater). They’reall in injectionform, which means I get to learn how to administer them to myself– a daunting prospect but I’m sure I’ll cope. Once I pick a drug, they’llsend me a nurse to teach me what to do.
So that’s where we are. While I would’vepreferred to hear, “Youhave a B-12 deficiency,” I definitely feel better having a diagnosis– even if it isn’t an especially pleasant one. Many thanks to all of you for your concern, offers of help, etc. It makes it a hell of a lot easierto bear knowingso many peopleare pulling for me.
I should get back to work so I can get out of here. I’m a littletoo teary to be usefultoday. Oh, one quick lighthearted note before I go – my boss hugged me and said he thinks of me like a daughter. The hug was terrifying and followedby an awkward sort of touslinggesture. And given my knowledge of his daughters, I’m not sure being thought of as one is a compliment.