Hello friends,
Fatigue has been kicking my ass the past few weeks. So for this week, I decided to share an essay I wrote a couple of years ago. MS can be unpredictable in terms of when symptoms will worsen, and I wanted to give you some insight into this disease. I’ll (hopefully) have something new for you next week. In the meantime, here’s a look at how I was diagnosed with MS.
Also, Substack has an app now! You can now read Letters on Being in the new Substack app for iPhone.
With the app, you’ll have a dedicated Inbox for my Substack and any others you subscribe to. New posts will never get lost in your email filters, or stuck in spam. Longer posts will never cut-off by your email app. Comments and rich media will all work seamlessly. Overall, it’s a big upgrade to the reading experience.
The Substack app is currently available for iOS. If you don’t have an Apple device, you can join the Android waitlist here.
Now, onto the good stuff.
A year ago, my tongue went numb. That's how it started. I wasn't that concerned because I'd burnt my tongue on a cup of tea the night before. I'd bought a new flavor, and I was too excited to taste it to let it cool off. It was weird, though. The tip of my tongue, where I burnt it, felt different than the right side of my tongue. The tip felt burnt, raw. The edge felt more tingly and numb. It was odd, but I ignored it. The next day I started getting dizzy, and I felt like I was coming down with something. Again I shrugged off the symptoms. It was probably just a spring cold. Annoying, but nothing to worry about.
A few more days went by before I got concerned. The tip of my tongue had almost healed, but the edge felt worse, and the numbness had spread. By that point, the whole right side of the inside of my mouth was numb. My tongue, jaw, and cheek were all tingling. I couldn't chew on that side anymore because I couldn't feel the food in my mouth. On top of that, the dizziness had turned into full-on vertigo. My whole world was spinning around me.
At this point, I made an appointment with my primary care doctor. She couldn't see me for a couple of days, and in the meantime, my anxiety kicked into overdrive. I knew I shouldn't start googling my symptoms, but I couldn't help myself — terrible decision. Words like Bell's Palsy, multiple sclerosis, Guillain-Barré syndrome, stroke, and tumor all flew out at me. My breathing got shallow, my heart rate went up, and I had to shut my computer off and talk myself out of a panic attack. The Internet always tells you you're dying.
I stayed off WebMD for the next couple of days until I saw my doctor. The nurse led me into the exam room, asked me a few questions, took my vitals, and left. The vertigo was so severe by then that just moving my eyes made me nauseous. I got out of the chair and lay down on the exam table. I waited there, fighting the urge to vomit until the doctor came in. We talked for a while, and I told her my symptoms. She said it was probably just a viral infection, wrote me a prescription for anti-nausea medication, and sent me home.
The anti-nausea meds helped with the constant feeling that I might be sick, but my other symptoms didn't improve. After a week, the vertigo was as strong as ever, and the numbness had spread even more. The whole right side of my face, inside and out, was numb at that point. I also felt a painful tingling sensation on the right side of my body, as if I'd come inside after standing around in freezing weather and was thawing out. I called my doctor and made another appointment.
I call her my doctor, but she's a nurse practitioner. I like that about her; nurse practitioners tend to listen when you tell them something isn't right. As soon as I told her about my worsening and new symptoms, the first thing she said was that she was wrong, and we were going to figure out what was happening to me. She ordered a full panel of blood tests and a CT scan. Everything came back normal, and at that point, my doctor told me she would refer me to a neurologist. My problems were beyond her field of expertise.
By then, I'd done more googling. As more frightening words showed up, so did my anxiety. I told my dad about my fears, and he assured me that I would be okay. The Internet always tells you you're dying.
It was the end of May, and it took me a few weeks and dozens of phone calls to finally find a neurologist who could see me before August. I went in for my appointment and described my symptoms. The doctor told me he didn't want to scare me, but it sounded like I had multiple sclerosis (MS). He ordered a series of blood tests to rule out lupus, Lyme disease, and a few other autoimmune disorders. He also ordered an MRI to check for MS. I left his office and called my dad.
"So, what did he say?" my dad asked.
"He said it sounds like I have MS," I said.
"You've got to be fucking kidding me," my dad replied.
I felt slightly vindicated that my fears weren't unfounded, but that feeling only lasted for the time it took me to call the hospital and schedule my tests.
After several blood tests, an MRI, and a few weeks later, I found myself back in my neurologist's office. The blood panels were negative. The MRI was positive. It showed I had five lesions in my brain consistent with MS. I always thought it was odd that a test that confirms you have a disease is called a positive.
There's no definitive test to confirm MS, so my neurologist ordered a lumbar puncture—a spinal tap—even though the MRI was positive. Because this was my first incident, he didn't want to diagnose me with MS without being sure. Like before, I left his office and called the hospital to schedule my test.
A few weeks later, my dad drove me to the hospital so I could get a needle shoved in my spine. I changed into a hospital gown and watched a nurse insert a needle in my arm to draw blood. Immediately I knew something was wrong. I've had plenty of blood draws before, especially in the past couple of months. And while it's never a pleasant feeling, I've never felt pain shoot up my arm. I told the nurse I was in a lot of pain and that something was wrong. He checked the IV, flushed it, and told me it was fine. As I sat there with my arm on fire, I remembered an article about how medical professionals routinely ignore women. At one point, I started swearing and practically yelling at the nurse because, in addition to the stabbing pain shooting up the top of my arm, the bottom of my arm had gone numb. A different nurse taking my blood pressure looked at my arm and said, "Her hand is blue." I looked over, and, sure enough, my whole hand had turned a faint shade of bruise-colored blue.
"Oh," the nurse doing the IV said. "Well, now that we can see something is wrong, we'll take the IV out."
As soon as he removed the needle, the pain disappeared, and feeling and color rushed back into my hand. He didn't even apologize.
A few minutes later, the nurses wheeled my bed into a room where they told me to lie on my stomach on the exam table. After I turned over, the nurse tilted the table up (gravity helps the cerebrospinal fluid flow into the test tube) and dragged an X-ray machine over me. The doctor would use a live X-ray to see exactly where he was placing the needle. The doctor came in and walked me through the procedure. Then he stuck a needle in my spine. I didn't feel anything, and afterward, the doctor asked if I wanted to see my cerebrospinal fluid. I perked up. "Hell yeah," I told him. I was still lying on my stomach, so he rolled his chair over to my face and showed me the tube full of clear liquid. "Cool," I said. He laughed.
After the procedure ended, some nurses rolled my bed into a waiting area where I had to lay on my back for the next two hours. Cerebrospinal fluid doesn't circulate, so I had to stay horizontal to give my body time to replenish the fluid taken and prevent putting pressure on my brain. My dad got me a coffee and a muffin from the Starbucks down the hall. He then promptly fell asleep in the chair next to my bed. I scrolled through Facebook and Instagram while I waited to go home.
After the two hours passed, a nurse put me in a wheelchair and brought me outside. My dad was waiting there in the car. I spent the rest of the day lying on the couch watching Netflix, only getting up to eat and go to the bathroom. When I stayed upright for too long, my head throbbed.
A couple of weeks later, I received an email telling me my results were available. As I expected, the spinal tap confirmed I had MS. But when I saw my neurologist a couple of weeks after that, he said the opposite. He told me all my numbers were within normal range; this wasn't MS, we'd have to keep looking. I told him that I looked at the results, and from my understanding, they confirmed MS. His response? He flipped through a couple more pages of my results, looked at them for a second, and said, "Ah yes. Okay. Ignore what I just said. You do have MS." He then wrote me a prescription for Copaxone, an injectable disease-modifying treatment (DMT), and sent me on my way. He was already out the door before I could ask any questions.
I'd been a little put off by this doctor for a while, between the higher than average co-pay, the fact that he barely spent any time with me, and his generally iffy nature, but this was the last straw. You can't just miss a diagnosis like that and expect me to think you're good at your job. I went home that day, did some research, and found a neurologist in my area who specializes in MS.
A couple of weeks after that, I met with my new neurologist, and I knew this was the person I wanted to help me through this disease. It was then September, four months after my symptoms started, and I was relieved to feel like I finally had a grasp of MS. My new doctor spent time with me and listened to what I was going through. He walked me through my scans and pointed out where my brain lesions were and how they might affect me. He told me they were currently inactive, meaning I was in remission. My symptoms had faded some time ago, so that made sense. I told my doctor that the Copaxone gave me horrible injection-site reactions (pain, swelling, itching, hard spots under my skin). He said it was surprising someone would prescribe that as a first-line treatment when there are more convenient and effective options. He walked me through the different medications I could try and how each one would affect me before asking which one I wanted to start on. He asked me if I had any questions and took the time to make sure I understood the answers. When I left his office, I felt like I might actually be able to handle this disease.
Since my symptoms first began, I've been on a rollercoaster of experiences and emotions. The first pill I tried didn't work very well. I had a flare-up after a few months and developed hair loss and burning neuropathy in my toes. The current pill I'm on affects my liver, so I might have to try something new soon. I had to buy a cane to aid my bum leg. I can no longer tolerate heat without feeling like I've just run a marathon. Some days the fatigue is so bad I can't get out of bed.
I'm still new to MS, and there's so much I don't know, but I'm learning. I'm learning that some days are worse than others. I'm learning that there are certain things I can't do anymore. But I also know that I have a loving support system, and there are millions of people going through exactly what I'm going through. I'm learning I'm not alone.
A year ago, my tongue went numb. It's still numb, and it will probably stay that way for the rest of my life. But I've adapted, and I'll keep adapting to whatever MS throws at me. I choose not to give up on myself. I choose to keep going. I choose to live my life the best I can and know that whatever that looks like is good enough.