Friday, 30 March 2018

Surprise relapse and the dreaded prednisone

I've peeled myself out of bed and away from my iPad for an update.  Thank you to everyone who has asked.

To fill you in:

Yesterday I had another follow up appointment with my neurologist after my bad Ocrevus reaction.

Three months after the infusion and I am still feeling off.  A lot of dizziness and extreme amounts of fatigue, and last week I noticed my eye seemed "off." I couldn't tell what it was, so it was added to the pile of unexplained MS stuff.

My physical neurological exam showed that I now have MS-acquired eye nystagmus.  One eye literally shakes in it's socket and can't follow my Dr's finger in a straight line or without "jumping." It's a relapse.  And hopefully a temporary one.

And I couldn't do any of the balance tests.

There is no way to know if this has been caused by the Ocrevus, by my body reacting to this new drug mechanism, or if it's a completely separate event.

He examined me three times to be sure this all was as serious as presented, and admitted me for corticosteroids in hopes that they would help. I started yesterday and need 3 high IV doses, so will continue Tuesday/Wednesday.

Today I feel a mess.  Like my brain is loose and rattling inside my skill. Dizzy, disoriented.  A massive steroid headache.  I managed some sleep but am jittery and agitated.

(And had an ice cream cone for lunch.  Ha.)

I feel exhausted fighting this; tired of trying so hard without much result.

My heart feels heavy.

I understand that this is part of my life.  A huge part.  And I am ok with that.  I'm still learning, and living, and gaining perspective.

These little glimmers of reality just make it that much harder.

(But I'm still gonna put a funny picture right here:)


1 comment:

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