I guess I should start my story where all good stories start: at the beginning. Huh. Okay, not at the
beginning, as in, "I was born in..." because that would be incredibly boring. But the beginning as in: it started with a little numbness and tingling in my fingers.
Now, as a hypochondriac, I'd already have stopped reading my own blog, because the instant I hear about a symptom of any kind, I am convinced I have the hideous accompanying ailment. For those of you brave enough to soldier on, here's what happened next:
I ignored these symptoms for several months, as any scared-of-a-death-sentence-diagnosis hypochondriac worth his or her salt will do. My coworker Charlie helped me adjust the level at which I held my hands when I typed. See, I had decided by then that it was most likely carpal tunnel syndrome. Yep, that can cause numb hands, and my imagination failed in its usual task of conjuring up fatal diseases. When the adjusting trick didn't work, I figured it was time to see a doctor. "What's the worst that can happen?" I thought. Did you ever see a movie when the main character says something ridiculous like, "Well, it can't POSSIBLY get any worse!" or "Phew, glad that's over!" and you shout at the screen, because you know it will get worse and it's most certainly not over. So, yeah, that was me. Had I for a second suspected I had a serious illness, I would not have been so cavalier about making that appointment.
The Appointment
"I think I have carpal tunnel," I announced to my primary care physician. "And I've been under a lot of stress."
The doctor asked me about my symptoms. There had been a new, odd thing I'd noticed: an electric-like jolt down my neck when I bent my head. And there had been an incident at my 35th birthday party.
My niece had given me a pair of earrings. When I went to take the ones out that I was wearing, to swap them for my pretty new ones, I couldn't feel my fingers. I thought I was holding an earring, but in between my thumb and pointer finger was nothing. I laughed it off at the time, and tried to again at the doctor's office, bleating more insistently about the stress and my theory of carpal tunnel. He appeared unconvinced and then did a scary thing. He said I should see a neurologist.
The Second Appointment
The neurologist turned out to be my dream doctor -- kind, patient, warm, and reassuring in the face of my ever-increasing unease. She did an exam, the details of which escape me now, and then ordered some more comprehensive tests. There was bloodwork, an MRI, and, horrifyingly, a spinal tap.
"Do not go home and get on the internet," she cautioned me, saying there was a wealth of misinformation that would only frighten me. (Apparently, my wobbling voice and panicky attempts at being funny clued her in to my state of mind.) There was no chance I was going to do something so foolish. I've looked up the most innocuous medical-related items ("how to remove a splinter?") and found 2,345,987 links to "cancer." I wasn't ABOUT to start Googling my symptoms. Better to bury my head in the sand and pray for the old stress/carpal tunnel diagnosis.
The Followup
Alas, that was not to be how my story went. I was at another family party (we're really not big party animals; not sure why this tale involves so many festivities) when I got a call on my cell phone. It was my neurologist. She wanted to see me in advance of my follow-up appointment, which was scheduled for about a week later.
"Bummer," I thought. Okay, not really. "Sh!t! F*ck!"is probably more likely. I've seen my share of movies and TV shows to know a "We need to see you early to discuss your test results" call is never a good thing.
The next day I was with my husband, drowsing in the waiting room. No, really, I was! But only because my neurologist had prescribed Valium for me to take before my spinal tap, and I decided this appointment merited another dose. When it was our turn, she didn't waste any time.
"It's multiple sclerosis," she said, very gently.
I cried a little bit, and then we talked about my options. She wanted me to begin taking disease-modifying drugs right away and recommended Rebif, a three-times-per-week injection. Overwhelmed, but confident in her advice, I agreed. She said a nurse would come to my house to show me how to give myself the shots.
My Very First Relapse!
Apart from the benefit of being in the care of medical experts, as well as the probable benefit to being on medication, it's a damn good thing I was diagnosed when I was. It couldn't have been more than two weeks after my diagnosis when I had a major relapse. In the MS world, that means something fairly scary happens. In my case, I was at work and began noticing a weird feeling in my right foot. I was supposed to go to a karate lesson with my friend Cleo that night, and I was secretly relieved to have an excuse not to go, mostly because I sucked at karate. The weird feeling got worse, and then it spread to my right hand. In just about an hour I was literally unable to walk or hold anything in my right hand. (Had I not known about the MS, I would have assumed I was having a stroke.)
"This could be it," I thought, sobbing as I tried to make my way down the hall at work. "I'll never walk again."
A kind soul helped me into a chair and my husband came and stuffed me in the car. We went to the ER to be sure I wasn't, in fact, having a stroke. One CT scan and several hours later (by then I was able to shuffle around on my own), I was released with instructions to call my neurologist the next morning. When I did, she prescribed a three-day course of intravenous steroids.
The first day of steroids, I went to a center where a nurse put me in a cushy recliner and monitored me to ensure nothing terrible would happen, like an allergic reaction. Once it was established that I could tolerate the steroids, a nurse came to my house to show me how to administer the following two days' worth. I had a catheter in my arm; she told me about changing the bag with the drugs in it, keeping the spot dry, and how to look pathetic while dragging around one of those stands with the IV attached.
The steroids worked wonders. After the three days were up, I was able to walk again and use my hand. I wasn't walking at what anyone could call a brisk clip, but I was just so damn happy to be WALKING that I didn't complain. (That's probably not true; I'm sure I did complain.)
Fast Forward
Now I'm going to fast forward several years, because (a) I'm getting tired of typing, (b) this entry is really long, and (c) my memory sucks. My Very First Relapse was the worst. I've had two other occasions to be given steroids. In the second instance, I was experiencing the MS Hug, a delightful feeling of intense pressure across your midsection. It's like wearing a very thick belt that's meant for someone four sizes smaller than you. During that episode, I lumbered around the workplace like the Hunchback of Notre Dame; I literally could not stand upright.
My third episode was a little more than a week's worth of shooting pains in my head. I called them "brain zaps," because I am incredibly clever. They were about a second's worth of stabbing pain and were totally random, although I could count on one every morning when I woke up and got out of bed. A pleasant way to start the day, indeed.
Little more fast-forwarding...I am no longer on Rebif, and I no longer see my kind neurologist. I am on Copaxone, which is a daily injection, and I see a doctor at Georgetown University Hospital in Washington, D.C. After a routine MRI, my neurologist decided that I had too many lesions (and at least one big one, which makes me think my brain looks like Jupiter with its giant red spot) for her to be comfortable handling. She wanted me to see an MS specialist. The doctor I'm seeing now is also very nice and patient and thorough. I have an appointment to see him Jan. 18. At that appointment, I'm going to ask him about the benefits of a dramatic diet that purports to work wonders in MS patients. It's called the Swank Diet. I am in no way affiliated with anyone related to the diet; I'm just hoping to share my experiences here. The diet looks pretty freaking hard, but I am lucky enough to have a husband who's willing to give it a go with me.
Here's a link that explains the basics:
http://www.swankmsdiet.org/About%20The%20Diet
I'll be checking in as I face 2013 with NO CHEESE (pizza is my favorite food). Ideally, in time, I'll have some tasty recipes to share.
Happy new year!
Ms. CrankyPants