Eight years ago today, I found out that I probably had multiple sclerosis.
I found out at around 4 in the morning after spending six hours in the emergency room at Mass General Hospital after feeling what I can best describe as drunk for five days straight. It was maybe a month after I moved in with my boyfriend (now my husband) and it was right after we’d spent Labor Day weekend in New York with Christian’s family and friends. We’d had a great weekend visiting with friends, and we even got to stop at IKEA in Elizabeth, NJ for some inexpensive home goods.
I though at first that the dizzy, unbalanced feeling meant that I was just really tired after a long weekend. It got weird when I woke up on Thursday morning, my second day of classes (I’d re-enrolled in college the previous spring, and this was my second semester back). When I’d gone to the ladies’ room throughout the day, I thought I noticed that my left eye looked funny. I brushed it off. Every time I’d go to the ladies’ room and glance in the mirror as I was washing my hands, I’d notice it again: my left eye wasn’t centered. It was turned outwards too much. Nah, I was imagining it.
That night, Christian (my boyfriend-turned-husband) met me at school since it was dark and I’m neurotic about taking the train home alone. He asked me what was wrong with my eye, and I started crying. I decided that it was time to go to urgent care at the doctor’s office.
We went to the urgent care office of my medical practitioners, and they had no idea what the problem could be. I had a lazy eye when I was little. I don’t actually use my left eye, or I barely use it. My brain sort of ignores that it’s there. The thing is, my eye’d been fine since I had surgery when I was 6 years old. I was 23, almost 24, and my eye had been fine until that day. They sent me to Mass. Eye & Ear, and they concluded that I just needed to have surgery again, that it was normal for adults to need to get the surgery done again for strabismus, no big deal. I stayed home from work the next day since we didn’t get home until about 1 in the morning, if not later. The next two days passed, and I didn’t feel better. I felt… drunker. I was a little uncoordinated and I felt very dizzy and lightheaded. I went back to the doctor after my best friend wondered if I didn’t have an inner ear infection as they can feel similar. Back to urgent care on Sunday afternoon. The NP that I saw concluded that nothing was wrong with my eye, but was concerned that maybe I’d had a stroke (!?!?!), so she sent me to Mass. General.
We waited for six hours in the emergency room before I was sent for an MRI, and then another couple hours waiting for results in the triage area. The lady on one side of the tent I was in had glass shards stuck in her arm as something had gone awry while she was shooting up, and the guy on the other side was finding out that he had cancer. I was tired and freaked out. A young, kind of nerdy guy finally showed up and told me that the good news was that I didn’t have a brain tumor. I think I might have started crying a little then. He told me that he thought it was very possible that I had multiple sclerosis, and I started crying harder – what little I knew of multiple sclerosis was “Horrible disease that puts you in a wheelchair.” Nobody in my family had it. Everyone in my family has 1) diabetes, 2) high blood pressure, or 3) some sort of mental illness. I had my bets on diabetes – that’s the shitty but manageable illness I always assumed I’d get. Multiple sclerosis? What the fuck? The doctor assured me that multiple sclerosis was in no way as horrible a diagnosis as it might have been ten years ago because now they at least had some effective treatments besides “sorry, dude, that sucks.” I was told that I’d be admitted for observation, and Christian was told to go home since there was nothing he could do but get some sleep. He had tears in his eyes as he left to go home, and I dozed off.
I woke up around 8 in the morning to a half-dozen people crowded around my bed. I was told names that I promptly forgot. They had me track their fingers with my eyes and asked me some questions that I no longer remember, and I dozed off. I woke up about every hour needing blood drawn or my IV checked or something. Since it was now Monday, I had to call work and say why I wouldn’t be in today. I remember telling my boss to look across the river cos I could see work from my window. He told me to take as much time as I needed and I said I’d be out all week (it’s kind of a shock to hear your brain is broken). I got wheeled out of my hospital room to go to a weekly neurology seminar where this ancient doctor who apparently invented multiple sclerosis or something performed a neurological exam on me while his students/underlings watched and learned. I decided to show them how I could turn my left foot all the way around since they had me balancing on one foot and whatnot. I was asked if I was into acting. Heh. Show-off. I was sort of hoping that I was going to end up as the subject of someone’s paper in the New England Journal of Medicine or Lancet or something, but alas. Not this time. I need to wait and have something weirder happen to me than “classic” MS symptoms. Barf.
I went back to my room, and I believe around lunchtime, my friend Andrea came to stay with me (she is sort of like Rasputin in that she’s had all kinds of crazy illnesses happen to her and she’s still alive and ticking). I had called my best friend Prairie and my parents and demanded visitors. One of the nurses took me back to Mass. Eye & Ear in the afternoon to get some more testing done, like some brain-eye business that involved looking at dots and following fingers and doing like the same eight tests for every doctor that came across me. I was starting to get a bit irritated at this point. The irritation increased after I was left on a guerney in the hallway at Mass. Eye & Ear FOR AN HOUR. AN HOUR. I was pissed by the time the nurse materialized to get me, and judging by the lame non-excuse she gave me (like literally had no excuse), I took this to mean “I forgot about you, oops.”
Oh, I forgot: earlier in the morning, I reluctantly agreed to let them perform a spinal tap on me after I first refused. My dad told me that I’d had one as a baby and I was terrified. I’d read about them and they sounded horrible. Giant needle in your spinal column for ten minutes. “Fuck” and “no,” thanks. I finally agreed after someone pointed out that small children could go through with it. That was a pretty good line because I wasn’t about to be outclassed by brave seven-year-olds.
I think it was around four or five that my boyfriend, my BFF Prairie and her boyfriend/now-husband Mike all showed up along with Andrea. Christian brought some stuff from home for me, including my beloved teddy, Teddy. I wanted to give Teddy some hugs while I got a needle jammed into my spine, and that whole process started shortly after everyone got there (which I was really, really grateful for because I maintain that it was the single most traumatic medical experience I’ve had in my life).
I was given some ativan to take in the hopes that I might stop crying/freaking out long enough for them to stick in the needle. I was given some sort of anesthetic, and Operation Spinal Tap began with one of the neurologists and a guy that I think was a research fellow? Anyhow, in went the needle. My skin was a bit numb, but not my insides. Holy shit. I thought the needle was going to come popping out of my back, tearing through my skin. The pain was unimaginable, and I started shrieking and punching the mattress and biting the pillow and sobbing uncontrollably and hyperventilating, all at the same time. Everyone told me to breathe and that I was doing okay, but I knew I wasn’t. That fucking thing hurt like nothing I can imagine and I kept screaming and crying. They figured out that the needle wasn’t in straight. You don’t say! The needle came out, and one of the nurses started pumping more ativan or some sort of liquid-stop-freaking-out serum into my IV. It didn’t do much, but they were able to start again, and while the pain was still immense and the feeling was one of pain and violation, they were able to collect whatever spinal fluids they needed and left me alone. As this was happening, two of my coworkers came by with some flowers. I think they might have seen my ass. I don’t know. I had my undies on, but my gown was pulled up and I was lying on my side with my back facing the door and me facing my friends/the window. After I got bandaged up, the drugs started kicking in and I started feeling much, much better. Prairie found out that Kelly’s Roast Beef would deliver to Mass. General, and so we ordered some food (fried clams!). Shortly after this, my parents showed up with some food. Noooo! They stuck around with us until the food came from Kelly’s and I sunk more and more into “I am not afraid of the police!” mode from the freakout-neutralizer I’d been given earlier. I remember my dad feeding me a fried clam and remarking that it was like the scene from A Clockwork Orange where Alex is getting fed by the Interior Minister. I had another MRI scheduled and everyone got kicked out of the room. I dozed off during my MRI and ended up back in my room.
The next morning, I was told that I was being discharged. They weren’t sure if I had MS although all signs pointed to yes… they’d found some old, healed lesions in my brain along with the new ones, and I guess the particular spot that all of these brain spots had shown up in were like super-textbook-classic places for MS to show up. I was told to come back to see one of the neurologists I’d seen that day, was given a bunch of blood tests to rule out other brain-lesion diseases like Lyme and HIV, and was sent on my way, tired and lacking blood and spinal fluid and still uneasy on my feet. They’d considered giving me steroids but had decided it’d be more harm than good. My parents picked me up along with Christian, and I asked if we could go to Figs in Chestnut Hill for lunch. That was a dang tasty lunch: I had fig pizza with prosciutto. Everyone was a bit put off by the side of grilled asparagus for $8 that was like six stalks of asparagus. Whatever, Todd English. Hmph.
Anyhow, I spent the next few days between my parents’ home and my own as someone needed to keep an eye on me and help me get stuff. I mostly just thought about how much I didn’t want to have MS.
Months passed. In November, I went for the follow-up exam that had been scheduled back in September, and the neurologist referred me to the MS clinic at Brigham and Womens’ Hospital. I went there in March of the following year after having had another MRI. She thought there were some new teeny-tiny lesions, but she didn’t think it was enough to worry about. She was waiting for me to have more big ole’ brain lesions like I’d had before to decided if I had multiple sclerosis or not. I didn’t have to wait long. On June 13 of 2003, it was confirmed that I did indeed have multiple sclerosis and my reaction was to cry. A lot. They had the uncomfortable job of asking me if I’d be willing to participate in some research projects because they really needed young people newly diagnosed with MS to try some other therapies out. They also wanted to put me on a high dosage of steroids for three days in their infusion clinic. I agreed, knowing that my tears couldn’t really be helped. Before then, I’d been given some literature on all of the different therapies available. They all sounded pretty crappy. It was decided that I’d go on Copaxone since I’ve had a history of depression and the other therapies could bring about suicidal thoughts in such people. No thanks! I like being alive! MS isn’t that bad. It’s not cancer, is what I always tell myself. A month later in July, I got my first box of Copaxone after putting up a fight with my insurance company (they wanted me to pay out of pocket and submit for a reimbursement and I said that I didn’t have $1K+ every month just burning a hole in my pocket. I won that fight, and they charged me the middle-tier copay of $25). I got a lesson from one of the nurses at the MS clinic and thought that it burned so bad that Copaxone was surely made of hydrochloric acid or bird chiles or something because it kind of felt like someone had taken a Le Creuset pot fresh from the stove to my stomach for the next 1/2 hour after my first shot. It wasn’t that pleasant. I had to get used to giving myself needles, and the burning sensation that lingered around afterwards, and the skin infections that would sometimes happen, etc. Still, I reasoned, it was better than feeling suicidal and having my liver monitored. And it was still better than cancer. I became depressed anyhow. I started putting on a lot of weight around this time, too.
Anyhow, I remained mostly lesion-free until 2009. Sometime in 2006 or 2007, I started becoming careless about taking my medication daily. I’d occasionally skip a night every few weeks, then every couple weeks, then every week. Sometimes I’d go a couple days, then several days. Then weeks. Then even a month or two. I had no new brain lesions showing up on my MRIs. Maybe I didn’t really have MS? My neurologist warned me that I had to stop doing this. Since I was fine, I didn’t feel inclined to be strict.
Then last year, I woke up with my right thigh and private parts feeling numb. Just out of the blue. I went a couple of weeks before my doctor sent me for a spinal MRI thinking maybe I had a herniated disc or something. Nope – MS had caught up with me and probably caught up with me not taking my meds compliantly, too. I had to go for five days of IV steroids because the lesions were really, really bad. My right leg was messed up for months. The numbness in my lady-junk went away pretty quickly, but I walked with a cane for several months. My right leg still feels kind of crappy sometimes, like weak and sometimes I get muscle spasms.
In December of last year, I woke up to find my right hand was extremely weak. I couldn’t hold a pen very well and I couldn’t keep control of a fork or type without trouble. I went back to the doctor and again, it turned out that I had new disease activity. More steroids. In April of this year, I woke up feeling drunk, just like when I found out that I had MS originally, and an MRI confirmed 20 new brain lesions. More steroids. I had an MRI in June as regularly scheduled and I had more new brain lesions (seeming to coincide with me having trouble peeing: I’m always, always grateful that instead of peeing my pants like some MS patients, I simply can’t pee – it can cause UTIs and discomfort, but given the choices, I feel this is the less psychologically-troubling symptom). It was concluded that even though I’d been Scared Straight for a year and had now been taking my Copaxone like a good girl, it simply was no longer working.
A couple of weeks ago, I met with my neurologist for my regularly-scheduled twice-annual appointments with him and the topic of other treatments were discussed: interferons (the suicidal-feelings-causing meds), steroids (the weight-gain and thinning-hair-causing meds), Tysabri (the occasional-death-causing med), or chemotherapy. So many horrible options! My neurologist decided monthly steroids and a blood test to see if Tysabri was apt to kill me was the plan.
Today, I had the first of two months of steroid infusions. I’m pretty okay short of feeling a bit dizzy. My mouth has a gross aftertaste left in it. Even though it’s been eight years, it’s been a pretty kind eight years and I hope I sound or seem grateful for that. Crushing depression aside, I’ve been lucky. There’s not a ton of serious, debilitating long-term damage done that I haven’t found ways of dealing with to get on with my life (aside from ongoing problems with memory and cognitive ability from time to time, and the aforementioned hesitancy when peeing). I can walk, talk, run, climb, cook, draw (though I don’t think I draw as well as I used to, but that could just be from lack of practice, really), and do just about anything that my friends can do. I do get tired very easily, and I have found that I can’t walk that far for that long without having pain in my right leg. I don’t really see it as horribly damaging. Overall, it could be much worse. Some nastiness, but on the scale of Life Troubles, I’d rank it as “Teenage girl kept from going to party with 19-year-olds in questionable neighborhood under questionable circumstances by obviously extremely cruel and embarrassing parents” inconvenient as opposed to “Country is overtaken by radical forces, house is burned, and family whereabouts unknown, need to make border crossing ASAP” horrible. Oh, and I gained about 100+ lbs. from depression + medication, of which I’ve so far lost 56. Slowly but surely. My heart rate’s fine, blood pressure’s fine, blood sugar’s fine, skin’s a little dry, got a few more wrinkles under my eyes, but hell, it could be worse. And it may get worse, or it may not. If someone new to MS ever happens to read this, be comforted in knowing that MS can be as mild as it can be nasty.