Diagnosis, Part Two (Electric Boogaloo): In Which a Diagnosis *Is* Given (Spoiler: It’s MS!)

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:

        From:      “Rebecca L. Scott” <rebecca_scott@netzero.com>
Sent:      Friday, April 23, 2004 10:21 AM

Subject:   results

Hello all,

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.



Diagnosis, Part One: In Which No Diagnosis Is Given)

Picture it: Washington, DC (or, more accurately, Arlington, VA), 2004. Neal and I are getting groceries at Shopper’s Food Warehouse for the Superbowl Party we’ll have that night. My stomach is acting funny, so I make repeated trips to their sad, stinky little bathroom. Sitting under the fluorescent light I noticed my feet were asleep. Both of them. Full pins and needles. Weird, right? But I stood up fine and walked okay, so I got on with buying avocados and chicken wings. Football snacks do not make themselves.

Wardrobes were not the only things malfunctioning that year!

In the weeks that followed, the pins and needles persisted, subsided some, and then moved to my thighs, torso, and eventually settled in my arms and hands. Neal was a little worried, but I shrugged it off. In high school I’d had a numb-ish forearm for months that was attributed to a pinched nerve in my elbow. In 2002 I had spasms that distorted the right side of my face and were alarming to see (sorry, Neal!), but they didn’t affect my life much and also disappeared on their own. Surely this bizarre traveling carnival of mild discomfort would leave of its own accord, too.

The arms bothered me more than my condition’s previous residences. This was in the dark days of my career, when I was an executive assistant at a government relations consulting firm, typing long, poorly written memos from my boss with whom I shared few political stances and even fewer ethical ones. My typing speed was lightning fast (thanks, college all-nighters!), but the semi-numbness made my hands clumsy. Worse, it was impossible to find a comfortable position for sleep. I self-medicated with Benadryl and other OTC sleep aids for a week or two to no avail before calling the doctor.

Since I was 27 and invincible, I did not have a GP. I’d always been dedicated to taking care of my ladybits, but the rest of my body? Who has the time! Thus, I found myself scanning my insurance company’s listings and settling on Dr. Van Damme. Who wouldn’t go to Dr. Van Damme? (Sidenote: there are undoubtedly better ways of picking doctors, but I often go for humor. My current gynecology practice was chosen the moment I learned Dr. Rebecca Bush was a partner. If that isn’t destiny, I don’t know what is.)

Alas, Dr. Van Damme exuded none of the strength and confidence of the movie star sharing his surname. His waiting room was dark and tiny; the exam room was a jumbled mess of papers and boxes with blunt, bold labels (the words “PLASTIC VAGINAL SPECULUMS” haunt me to this day). His bedside manner was that of an unfunny Woody Allen. He heard my tale, took my vitals, and shrugged, suggesting I see a neurologist. I left frustrated that relief wasn’t in the near future yet relieved that I’d never have to visit him again.