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As part of The Balancing Act's My Health series - Dr. Mark Cascione discusses Multiple Sclerosis and Bonnie Leedy shares her experiences living with MS and taking Ampyra®. Please click the video thumbnail below to view this story. video player image Produced by O2 Media, Inc for the Balancing Act TV show

Destination Unknown: Demystifying Multiple Sclerosis

Expert_badge Amy Gurowitz

Amy Gurowitz

Friday, December 16, 2011

If you are reading this post, chances are good that you've been diagnosed with MS and have your very own diagnostic tale; a "Where were you when you heard about Kennedy, Lennon, Cobain" story. It's often the first exchange when two people with MS meet.  "Diagnosed, 1988, only took one week after my first symptom," or "Diagnosed last year after a decade of unexplained symptoms and dismissive doctors." No matter how our stories differ, that day puts us on the same train; the one with no clear destination or announcements along the way to keep our bearings.

The MS journey is all "Un"­­- unpredictable, uncertain and unknown; how you get the disease, the severity of your symptoms, what treatments will work are all on the map of your future that is of course unchartered. This list of unknowns could easily extend beyond the reasonable word count for a post here, so let me be specific.  When I'm dealing with depression it may be the because of the scars on my brain, a side effect of my 10 to 12 meds, or just the reality of living with a disease that continually robs me of my abilities. But in the end I'm still dealing with depression, no matter the cause. Trying to determine the origin of any symptom is as useful as a lost ticket.

In over two decades with MS I've become accustomed living with changing abilities that have no explanation. And because of this, I've developed a coping mechanism that is essentially a "roll with it" stance. When it comes to these question marks, there is no point for me to waste energy on questions with vague hypotheses that leave me with even more questions, that no one knows the answer. And while I'm on that track, I'm caught off guard by anything that doesn't fit the "un" ticket.

For the last few years I've been sporting "pregnancy chic." My tummy ranges in size from a six month-er, to a four month-er to an eight month-er depending on the time of day you catch me. A pregnancy to endure without that lovely MS remission I remember so fondly... and no end date on the calendar.

I've mentioned it to my doctors over the years, usually as an aside to the main reason for the visit. No one seemed terribly concerned about it. And let's face it, calling attention to your enlarged stomach is not something any woman wants to do. When my questions weren't addressed I happily changed to subject back to the symptom de jour because maybe I am just gaining weight and how embarrassing is that!?

But I knew deep down that this wasn't a normal weight issue.  So with nothing else to do, I tried to accept it as another "un." Because if it isn't an MS symptom or a side effect, the only thing left is the gestation of an alien offspring. But wait!  What did she just say? My doctor was speaking while I was lost in irritation. "I think it's diastasis."  Diastasis?!  Hey! It's diastasis. (What's diastasis?)

Well, it's kinda like a hernia but different. She showed me the images of the condition on Google and for all intents and purposes I could be the poster-woman for this diastasis thing. (Note to self: call agent!) And without waiting for further confirmation I launched in to a full-fledged happy dance. I have diastasis! I have a diagnosis! I felt so validated. If my daughter were here right now, she'd say "BooYa!" to punctuate the moment.

I spent a week of testing to confirm what I believed to be true. Couldn't we just cut to the chase here? But much to my chagrin the first CT scan found nothing; the two subsequent sonograms, nada; blood work-up, zilch.

But wait! That can't be it! There has to be something!  So I sped off to the gastroenterologist's office with forced hope. Encouraged by his request for an endoscopy and a biopsy, I was ready to get my diagnosis on my return trip to his office. I arrived just in time for a guided tour of my innards. Lucky me! "Here on the left, that's your spleen, and here's your liver, and if you look right there you will see your duodenum and small intestine." It was interesting. I mean, I knew I had all of these things, but seeing them in context was very comforting. And in case you are wondering, they look great! No tumors, no growths, nothing to be concerned about and nothing to blame for the pregnancy that won't go away. My great relief was quickly followed by utter frustration. After a pregnant pause, my Dr. hmmm-ed.

So it turns out I'm back on board the MS train, only this trip has a named station stop. One of the medications I'm taking for spasticity could be weakening my stomach wall. So, all tummy's digestive actions - the ones that keep me alive and kicking - are pushed out for the general public to see and ask about my due date.

Somehow, it's easier to get over the inappropriate glances now that I know what it is. And even though this new understanding sends me back into the traffic jam of scars, symptoms and side effects - I feel ok about it. There is just something awesome about knowing why.  In my life of accepting the unexplained, this is a whole new trip. I guess I shouldn't use the word trip when describing my life with MS, but you know where I'm going with that. And with this particular itinerary I know where I'm headed too!