Saturday, August 6, 2011

Off to a Flying Start - July 5 - August 6, 2011

On July 5, 2011, after I received my diagnosis of Clinically Isolated Syndrome, I went home with my family and just sat in my parents' family room in a state of shock.  This couldn't possibly be happening to me, I thought.  I'm brown-skinned (mixed race) and I've never had a neurological incident to the best of my knowledge.  I thought this had to be some kind of mistake.  Deep down, though, I knew that this was going to be my life starting that day.  Even though my diagnosis was only CIS and not MS, I knew that it was going to happen.  I still feel that way as I'm writing this entry (August 6, 2011).

I have to credit my neuro team for giving me the facts about disease-modifying treatments (DMTs) quickly.  They wanted me to start on a DMT quickly due to my high risk of conversion and the fact that I had presented with pretty mild symptoms (mostly sensory with no disability).  I was sent home with a package of informational brochures.  After a week, I decided to go with Copaxone - and to start treatment as soon as humanly possible.

I chose Copaxone mostly because I have had trouble with my liver in the past.  I didn't want to subject it to anything more if I didn't have to.  I wasn't worried about the daily injections (actually, doing it every day has helped me get into a routine) and I wanted as few side effects as possible.  The needle is teeny-tiny and the auto-injector thingy makes it super easy to administer.

The first three months of Copaxone are being covered by my private insurance.  My application to the Trillium Drug Plan and the Copaxone Assistance Program are still pending.  I don't anticipate a problem though.

Copaxone is going great for me.  I started on July 24 and I've only had one troubling side effect - about an hour of deep chills about four hours post-injection on my eighth day of therapy.  That and one hard lump under the skin on my right thigh after injecting there for the first time.

I am SO GRATEFUL that my sensory symptoms were serious enough for me to pay attention but not severe enough to slow down my daily activities.  I think I've been given the gift of a real warning and I praise God for that.  My attack is now going on two months and I'm still in it.  The symptoms are ever so slowly getting better but my optic nerve was slightly affected seven weeks after onset. (Those symptoms are pretty much gone now).  All in all, I know how much worse this could have been.

My next MRI is October 14 and my evoked potential test is October 21.  I'm praying for stability if not improvement.  Funny how life changes in a matter of weeks.  I'll check back in soon.

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