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Multiple Sclerosis

"My body turned on me": One woman's struggle with multiple sclerosis

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Ali Salama was diagnosed with MS, a disease in which your immune system attacks your brain, spinal cord and optic nerve, eating away the protective layer of your nerves and eventually the nerves themselves.SELF magazine

I thought I had a shin splint. It was July 2009. I was running, training for the New York City Marathon, when my right leg went numb. Just like that, out of the blue. I could still feel it enough to know it hurt, though. I stopped and stretched, but when the pain didn't go away, I hailed a cab home. 

For the next two weeks, I iced my leg and took a break from running. The pain faded and returned, so I told my (general practitioner) about it, and he sent me for magnetic resonance imaging (MRI), figuring I had a stress fracture from running 8 miles a day. The MRI came back negative.

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A pinched nerve, my doctor guessed next, and he referred me to a neurologist to investigate. It was a few weeks before I could get an appointment, and while I waited, my pain, like a ghost, started moving around and up my body to my arms. 

When I told the neurologist about my traveling numbness, he said, in the most matter-of-fact voice you can imagine: "Maybe it's a pinched nerve, but best-case scenario, you have Lyme disease or multiple sclerosis (MS). Worst case, Lou Gehrig's disease or a brain tumor." 

I felt as if I couldn't breathe, like the air had been sucked out of the room. All I wanted was to escape, so after he rattled off the tests I'd need for a diagnosis, I just stood up and left. 

When I got outside, I called my best friend, Lauren, and we met for a manicure. Sounds funny, I know, but no one really tells you how to act in these situations, and I needed to talk. We sat at the nail counter, frantically looking stuff up on our phones, trying to convince ourselves everything would be OK. I remember her trying to comfort me, saying, "I know someone who had a brain tumor, and she survived it." Not much comfort at all.

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Over the next four months, I had three MRIs and an EEG to look at my brain, one spinal tap to search for abnormalities and viruses and a million blood tests to rule out some inflammatory diseases. I cried through each one. To say I hate needles is an understatement. I loathe them. But worse than the needles was the not knowing. 

I stopped running—doctor's orders—and started giving up on my life. I felt no happiness. I had no fun. I rarely went out, and when I did, I got sloshed. I just wanted to numb my emotions. Kind of ironic: My body had gone physically numb, and now all I wanted was for my feelings to follow.

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I was on my way to work one November morning when I got the call. "We think it's MS," my doctor said. "Come in to discuss treatment." 

I hung up without asking a single question. I thought, OK, now I know. I went straight to Starbucks, where I called Lauren and told her to meet me. When she saw me, we both burst into tears. "Let's call my mom," she said. We were like two little girls, hoping her mom would know how to make it better. 

My own mother isn't in my life. She left when I was 13. My sister and I talk often, but she's busy raising three kids in Chicago. And my father, who was my role model, died when I was 28. He would've been the first one I called; he would have known just what to say. Some people talk to God when things like this happen; I talk to my late father. I ask him to give me signs or tell me what to do. Without him by my side, I had to figure it all out on my own.

MS is a disease in which your immune system attacks your brain, spinal cord and optic nerve, eating away the protective layer of your nerves and eventually the nerves themselves. Its cause is unknown. It's two to three times more common in women than in men, and it strikes young: Two-thirds of people are diagnosed between ages 20 and 40. There is no cure. Early signs include numbness, blurry or double vision, loss of balance and fatigue. 

Eventually, I could become paralyzed or (though rare) blind or mentally incapacitated. I try not to think about that—living in fear is no way to live. But sometimes when I close my eyes at night, it creeps in: This is what it'd feel like to be blind.

I have the most common kind of MS, called relapsing-remitting. It comes with "attacks," where suddenly you go numb, your vision gets blurry or you lose your balance for a while, and then it just goes away for months or even years. 

I've had only one official attack, a few weeks post-diagnosis. I woke up one morning, swung my legs out of bed and couldn't walk. My right leg was stiff, painful. I was terrified. Was this the beginning? Would my leg stay like this forever? I went to the ER and stayed in the hospital for three days getting intravenous steroids, and then it was over. I fully recovered.

Not long after, I was scheduled to start MS treatment—which involved a half-inch-long needle I had to inject myself with every other day. I couldn't escape the shots! A giddy nurse wearing bad perfume showed up at my apartment to show me how to inject my belly. I hated her. She went on and on about how easy it was and how I'd get used to it, and she wouldn't leave until I showed her I could do it myself. By the time I managed to, I was sobbing. I couldn't believe this was my reality. Or that I'd have to do it again in two days, and two days after that, forever.

It was a lonely time in my life. The idea of dating filled me with fear and heartache. Who would love me? I was damaged goods. And when do you tell someone you have MS? On the first date? The third? I did see one guy casually for a little bit, but when a friend posted something about MS on my Facebook page, he messaged me: "What's this about?" I told him, and he disappeared, never responding.

Then, about a year ago, I met Jason. I thought he knew about my MS, because we had some friends in common. We'd been dating for two months when I asked him to go with me to an MS fund-raising event. 

"Why are you going?" he asked. 

"You don't know?" I said. My heart sank. I started sweating. Rather than try to explain, I brought him the speech I'd written for another MS fund-raiser, telling my story. I watched him read every word. And then I watched the tears start streaming down his face. 

"Does this change things?" I asked. 

"Absolutely not," he said, and then he hugged and kissed me and held me all night, just as he has every night since.

Now, sometimes I honestly forget I have MS. Last fall, I switched to a new FDA-approved pill—no more shots! I have a new doctor, too; one who encourages me to exercise (it helps stave off symptoms!). I see him every three months for progress tests, where I do things like touch my nose and speed-walk from point A to point B. 

And every year, I get an MRI. That's probably the only time, when I'm in that claustrophobic tube, when I still think, Why me? In fact, that's all I think for the 40-minute duration. But when the test ends, I go back to my life, where I feel totally normal.

Even though my body hasn't changed in any lasting ways—at least not yet, and hopefully not ever—I definitely have. Since my diagnosis, I've rededicated myself to being healthy, because I want to live as long and as well as possible. That means exercising more faithfully, eating right and eliminating negative people from my life. I do things that make me happy every day, because every day that I can walk, run, smile, talk and laugh matters more to me now.

 I also value my friendships more than ever. My friends have shown up for me in a big way: I always have someone to call, to hold my hand, to cry with. I would do anything for them. I'm more confident now, too, because I've been able to teach people what MS means—and doesn't mean. And knowing that one day I could be in a wheelchair has made me more patient and accepting of others. When I find myself getting really worked up, I take a deeper breath than I used to.

When I was little, my dad used to tell us bedtime stories about his childhood in Tanzania. He recorded them, and I recently played one for Jason, in which my dad talks about wanting to hike Mount Kilimanjaro. 

For my birthday, Jason surprised me with two tickets to Africa. We're going to climb Kilimanjaro in August, just like my dad dreamed of doing, and I've been training for it ever since: running, hiking, Spinning. I know the trek will help restore my faith in my body. And it'll reconnect me with my father, who, if he saw me now, would say, "Keep fighting." 

And when I finally reach the summit, 19,341 feet high in the sky, it'll be one big screw-you to my MS.

This article originally appeared on Self.com