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May 29, 2013
Uncategorized

World MS Day

Happy World MS Day!  Yikes. that doesn’t sound good when I say it out loud.  This is a day recognizing a disease.  And I know I’m not the only one who would be much happier if this ^(*&%^& disease didn’t exist.

But then I got my MRI results from my doctor – no new lesions and no sign of PML.  When I was first diagnosed, doctors thought that MRI’s were helpful.  Since then, there has been evidence that MRI’s are an important diagnostic resource.  And PML?  Yes, it’s a big ugly scary thing.  But what made the MS world know about PML was through Tysabri, another drug in the battle against MS.  When I was diagnosed, I learned the ABC’s – Avonex, Betaseron, and Copaxone.  There was some excitement that a new drug, Rebif, had just gotten fast-tracked by the FDA and would be on the market too.  ABC became CRAB, and since then it’s become too many to put into a word.  Tysabri and Gilenya have joined the party, with more on the way.  The needle is no longer the only option – there’s a pill.  After sticking myself over and over, there’s a way out.

It’s not just disease-modifying drugs.  There are ways to treat the symptoms, like Ampyra for walking and Baclofen for spasticity.  There’s even Botox, that has been approved for treating lower-body spasticity, upper-body spasticity, and bladder control.  We’ve got far more options to help us battle this disease.

So yes, happy is an overstatement.  The ideal would be eliminating the disease.  But at least we’ve got more weapons in our arsenal and are getting more each day.

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I am Amy Sparks. I'm a mom living w/chronic illness while parenting a tween and teen. We all need to speak up. Read More…

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