Ann's MS Story
I was talking to my brother Jim on the crisp autumn day when I realized something was wrong. After we talked, I got up from the chair and attempted to walk to the kitchen. It was one of those moments I'd examine in the weeks to come, looking for clues as to whether there was anything unusual about the motion – whether I stood too quickly or suddenly – because as soon as I got out of the chair, I felt unsteady. I'm not sure I even recognized I was falling over, until I almost hit the wall.
Everyone loses balance sometimes. Had it been an isolated incident, I probably wouldn't have given it much thought. But as I made my way back to the chair, other odd instances came to mind. For example, over the past few weeks, I tripped when I ran up the stairs. Of course, I'd maneuvered those steps a thousand times but lately, my feet didn't know where they were landing, like the staircase was some new invention and not a familiar part of a house we'd inhabited for years. Plus, the grip in my right hand seemed unsteady and a little shaky, like I was facing my seventieth birthday instead of my fiftieth. I didn't want to think about what could be wrong, but I sat back down into the chair with a thud and – a heavy nagging feeling.
I'm sure everyone's picked up a gallon of milk in the refrigerator and – not realizing it was nearly empty – hit the jug on the roof of the fridge. Well, that afternoon when I reached for a glass sitting on the counter, I had the opposite sensation. Instead of feeling too much strength, my arm suddenly – and surprisingly – had too little.
I've always been athletic – I played tennis, skied, and jogged pretty frequently – so the weakness in my arm caused me to dial my brother for the second time that day.
"Something's wrong, Jim," I said. "I don't know what it is, but I'm getting a little scared." He listened to my story without a word, then asked what I thought were random questions about – of all things -- my eyesight.
"Do you have vision blurred at all?"
"Pain when you move your eyes?"
"Are colors still as vivid as normal?"
"Do you have a blind spot?"
Although he seemed relieved at my answers, he prodded away and I detected fear in Jim's voice on the other end of the line.
"Ann," he said. "You really ought to see a neurologist."
It's hard to listen to a man who used to pull my hair and tell everyone on the bus I smelled like a barn. But something about the long pause, pregnant with unspoken emotion, got my attention. I didn't understand why I should go see a neurologist, but I followed his advice, and I was concerned enough to take Mitt with me.
We sat quietly in the waiting room and he held my hand, filled out the insurance forms, and smiled at me as the minutes passed. There were magazines scattered throughout the room, as well as brochures on the wall – Lou Gehrig's disease, Multiple Sclerosis, Parkinson's. When I realized there was no brochure for pinched nerves, I knew I had a problem.
Everybody's got problems of one kind or another. I think of them as bags of rocks slung over our shoulders weighing us down, and we all have a bag – even if we can't necessarily see others' bags and their strain isn't apparent. I'm still living with the disease I labored to come to terms with on that day, for example, but you can't tell it by looking.
The doctor entered the room, looked up from his chart which included my MRI results from a prior visit, and greeted us with the kind of stilted greeting reserved for funeral parlors and lawyers' offices... the kind made in less-than-pleasant circumstances. We were acquaintances already – but this was business, and he got right down to it. He put me through a series of neurological tests. He observed my reactions, recorded them on his paper, and seemed to weigh them in his head. He asked me to stand before him with my feet together, close my eyes, and turn around. Normally, people can keep their balance while doing this simple task, but my body wasn't really sure of its position. When I had my eyes open, I could compensate for this lack of certainty by essentially "cheating" with visual cues. But when I closed my eyes and began to turn, I immediately started to fall over. I looked ridiculous.
When he left the room, I broke down. Mitt cried too. He would've much rather have received the diagnosis than watch me receive it.
Strangely, I felt a degree of relief in the diagnosis, as bad as it was, because I finally knew what was going on. My condition had a name. Although "naming" the disease doesn't do a thing to cure it, there's value in having words to wrap around your mysterious symptoms.
I went home from the hospital the day I was diagnosed with a brochure about MS, like we'd just bought a washing machine and were given a pamphlet on the extended warrantee. I'd never read the word, "myelin" before, but I learned about it quite quickly. It's whitish and fatty, and forms a cozy protective sheath around nerve fibers in the brain and spinal cord. It insulates the nerves so impulses can be transmitted rapidly. Or at least that's what's supposed to happen. I'm one of over 350,000 Americans who have scarred and inflamed myelin, which hampers the communication in my brain. It's like cupping your hand over the phone and trying to talk – some info gets through, but not very clearly. Apparently, part of my body has decided to attack the parts that seem insignificant – but at great cost. In my case, my immune system attacks and kills cells that make myelin. This impairs my brain, but the extent of the damage is and will be uncertain.
Over the next four to six weeks, the numbness in my leg traveled up the trunk of my body. That's when I realized there was more to MS than I'd read in pamphlets and on the Internet. I was neither physically nor emotionally prepared for the kinds of symptoms I was experiencing. The brain sends messages along the nerve pathway in the spinal cord to the organs, but MS had altered my pathways and the messages simply weren't getting through.
Around mid-December, I knew I had to seek help. Eventually, I'd have several types of treatments: traditional medicine, equine therapy, and other alternative remedies. But at that time, my doctor hadn't prescribed any medication or therapies.
My doctor put me on intravenous steroids. They'd either work, he said, or they wouldn't . For some, it's miraculous. For others, it doesn't help at all.
The good news is that the intravenous steroids worked. The numbness receded all the way back down my leg, and stopped there. I know IV steroids work for me. I hated them – the side effects were just devastating – but I was obviously grateful something actually was effective. I wish I could say that was the end of the story, but it was not. I'd been chewed up and spit out by a monster and it had left me with a weak and numb right leg. That was okay, honestly, I could live with that. But the unrelenting, extreme fatigue was suddenly my new reality, and I felt like such a burden.
And that's when I felt the full weight of the new rock in my bag. Even though I had the loving support of my family, I knew this was my battle. I was not interested in going to group meetings or getting any help, after all, I was strong and independent. My charade actually helped me to better understand my mother's last days. During her chemotherapy, I invited her to live with us so she'd be closer to her doctor, but she refused. "Don't worry about me," she assured me even as she became frailer by the month.
As time has passed and I've come to terms with living with Multiple Sclerosis, I've realized how wrong I was and how much strength you can gain through others. My hope is that this website will provide an opportunity for all of those living with MS to share your feelings and experiences, especially those of you who have been recently diagnosed. The National Multiple Sclerosis Society offers a great resource via their online chatroom and message boards. I hope you will take some time to explore both.
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