Tuesday, 15 October 2013

Don't mess with the spinal cord...

Sometimes the appointments go fast. 

And sometimes the appointments leave you with decisions.  Choices. 

Choices that will affect how this disease will take its course.

My leg still isn't feeling better after my falling-down-relapse last month.  But, the relapse itself is done.  What I can feel now is residual damage.  Damage that will probably stay.  Each relapse I have adds a new layer to this mess we call MS - and that's how new symptoms become permanent ones I live with every day.

And like clockwork, that becomes my new normal.  Re-adjust and move on.

I've mentioned before that most of my relapses are caused by the large lesion in my upper spinal cord.  That hasn't changed.

Those frequent occurrences plus the permanent damage from my relapses, means it's time to get tougher.

My Neurologist's approach is one of "zero relapse tolerance."  When dealing with large spinal cord lesions, if you have repeat relapses on a certain drug, it's time to get off it, and try something else.

You don't mess with the spinal cord.

I've tried two drugs so far.

We are going to give my current medication another six months and another MRI - and if there are more relapses, new symptoms, or any changes to my MRI, we switch again.

We move onto a second line therapy drug.  Right now - there is only one option that fits for me.  It's a pill, which is nice, but it scares me.  It's called Gilenya.

My Neurologist, who takes a very aggressive approach toward treating MS, understands my concerns, but replied with "Well, you need to decide... are you more concerned about your disease progression or about the drug?" 

I already know the answer to that.  Always have.  I tend to take an aggressive attitude toward this too.  But switching to something with more complications, risks, and potential damage really terrifies me.  Then again - waking up tomorrow and not being able to walk probably scares me more.

No comments:

Post a Comment