Multiple Sclerosis Awareness Month: You Know Someone with MS. It's Me.

Mar 3, 2014

I've mentioned a few times on the blog that last year was a difficult one for me. Today's the day I talk about why. In April last year, I was diagnosed with Multiple Sclerosis.

I get usually two reactions when I tell people. Either a nod, an "Oh," and a blank look that tells me they aren't quite sure what the disease is; or a widening of the eyes and an "I'm so sorry!" exclamation that tells me they think I'll be in a wheelchair within five years. So with March being MS awareness month, I want to do my part to spread some awareness.

Multiple sclerosis is an auto-immune disorder. Basically, my immune system has become a zombie-- it eats my brain! Well, not exactly. Around every nerve is a protective coating, like the plastic around a wire, called myelin. My immune system sees myelin as a Bad Guy for some reason, and starts attacking it-- particularly the nerves in my brain and spinal cord. When this covering gets eaten away, the nerves can't conduct signals, and the nerves themselves can even get damaged.

For me, this showed up initially as a tingling in my fingertips, like they were constantly asleep. I noticed it last winter, and at first thought I had a pinched nerve. But then the tingling become a numbness and weakness that spread through my hand, making it difficult to do simple tasks I'd always taken for granted. It made its way up my arm, then down my side. And then it started on my right hand.

There were other things, too. What I had thought was late-onset postpartum depression I now believe was MS-related. I had extreme fatigue, so bad I woke up in the mornings and went back to sleep on the couch for most of the day. I started having mild problems with balance and weakness in my legs-- I could no longer do Zumba because I literally didn't have the strength. I even had odd things like being unable to recall words and having short-term memory lapses.

Blood tests came back clear. The doctor sent me to a neurologist to get an MRI to rule out the "scary" things-- brain tumor and MS. After having to insist on the MRI to a neurologist who passed off my symptoms as carpal tunnel, the diagnosis came through. I had lesions--spots--on my brain and spinal cord where the myelin had been chewed away.

Believe it or not, the first thing my husband and I did was drive from the doctor's office to our favorite sushi place for an "it's-not-a-brain-tumor" celebratory lunch. Because it could have been much worse.

But then there were more doctor visits, 3 days of IV meds, diet changes, more meds, new terminology, and over it all-- fear. Anger. My body had betrayed me. I wasn't supposed to get a disease that could disable me. I was supposed to never have to worry about being able to move and jump and run--and type my stories. For several months, I could barely do what I loved most and it completely terrified me.

I have what's called relapsing-remitting MS. I'll be fine for a while, and then my immune system will attack again. There's no way of knowing when, and no way of knowing how it will affect me. But it also means an attack will usually go away (though it can sometimes leaves permanent damage), either on its own or with treatment. It means that my type of MS is treatable, to an extent. Medications and other options that weren't available even ten years ago mean I don't have to face a downward spiral that ends only in permanent and complete disability.

MS is different for everyone. I currently feel healthier than I have in years. Most of my symptoms have completely disappeared, and I'm active and happy. Some have the disease worse than me, with harder symptoms and permanent disabilities. Some have it not as bad, with maybe only one relapse in their entire life. Some go from good to bad, or from worse to better. But all of us have hope because of continuing research.

This is my continuing story of MS, and each week in March, I'll be posting on a topic related to how it's changed my perspective. This isn't just about my particular struggle with this particular disease. It's about people all over the world who struggle with challenges. It's me wanting to open up about my story so others can better understand people who may be struggling around them-- and maybe understand their own struggles, too. I'm still trying to understand mine, so I hope this will even help me.

So, my friends, that's the plot twist that opened up in my life last year. It's been hard, and wonderful, and terrifying, and awe-inspiring. If you have questions, please ask, either here in the comments or through email! I'm eager and willing to talk about any and all of it to spread understanding. 

And if you can, please consider donating to the National Multiple Sclerosis Society to help fund research and support programs that benefit everyone who has MS. The current treatments for MS are a huge blessing, but even those are still not 100% effective. Even better than a treatment would be a cure.

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