3 Months Post-IVIG: A Wild Ride

Today is the three month anniversary of my IVIG treatment. It’s hard to believe it’s already been that long, but at the same time, it seems like an eternity ago because the last three months have been such a wild and difficult ride.

So far, the main improvement I’ve seen is with the chorea and tics. I’m starting to have a lot of days where they’re barely noticeable. The chorea is usually just a slight arm or leg jerk here or there—I don’t look like I’m constantly dancing anymore. I can actually sit still!

I've ditched the cane!
I’ve ditched the cane!

As for the walking issues/muscle weakness, that has improved significantly. In June, I could barely walk across the room without my legs giving out on me. I would be trying to walk normally, and suddenly my legs would become momentarily paralyzed so that my knees gave out and I fell to the floor.

Now, I often only have a couple minor knee-buckling episodes each day, and I’m usually able to catch myself before I go all the way down. These days, it just looks like a slight “hiccup” in my step when it happens.  I’m so glad I no longer have to walk around wearing knee pads while trying to stop the falls with a cane…

So has it been steady progress since my infusion? Absolutely not—especially when it comes to the mental symptoms. I have yet to see much improvement in my OCD or social anxiety. They’re both almost to the point of being out-of-hand.

As far as depression goes, I’m having some very good days when I’m hardly depressed at all, but I’ve also had some horrible days where I hate my life and just want to do nothing but lie in my room by myself and sleep.  Sometimes, everything just makes me cry for no reason. (Well, it is for a reason: brain inflammation.)

But that’s not even the worst of it. I’m having a relapse of my sleep disorder.  I cannot stay awake during the day, no matter how many hours I sleep at night.  If I sit down anywhere for ten minutes, I’ll fall asleep. The other day, I even fell asleep while standing up in a lab and nearly fell onto some expensive equipment on the lab bench. Oops…

So unfortunately, I’m still living up to my name: the Dreaming Panda.

I’m trying to stay positive about everything. I’m trying to think about how great it is to be able to walk again and to be able to sit completely still during class. But it’s hard. It’s really hard sometimes—especially when you’re so sleepy that you’re living in a dream world where everything seems unreal and a bit far away.  And let’s not forget how OCD and anxiety can confuse your world, too… (I have an entire future post dedicated to discussing this).  How do you see through the chaos of a brain that isn’t quite working normally yet?

But still, three months later, even though it’s been frustratingly slow, my progress towards recovery is becoming undeniable.  As hard as these months have been, I’m told that three to four months post-IVIG is usually the beginning of major improvements in PANS/PANDAS symptoms.  So yes, this eight-year nightmare must finally be coming to an end…

6 thoughts on “3 Months Post-IVIG: A Wild Ride

  1. Hi there again,
    I appreciate you blog so much. Thank you. My son has been getting monthly IVIG treatments, at home, every four weeks. 70 mls total over 2 days (35mls each day). How many treatments did you receive and at what dosage? Next week will be his 5th IVIG treatment. It seemed that there was some improvement after #1 and #2, but then no significant improvement (perhaps even an increase in tics, OCD and anxiety) since then. I am hoping and trying to remain faithful that this will help, that everything we’re doing will help. No one, child or adult, should have to live with this illness and the breadth of symptoms that it entails.
    Keep those blog entries coming…you give me hope!

    Like

    1. Hi Alisa,

      Thanks for commenting! I had two high-dose IVIG treatments of 2g/kg of my body weight. I got more the second time because I’d gained back most of the weight I’d lost from restricted eating.

      Hang in there. It’s a long and painful journey to recovery that doesn’t always seem to be forward progress, but your son will get there someday.

      Like

  2. I’m sorry you are still struggling, but overall I see this as such a positive post…….every little step forward just confirms that you will get there… there is so much HOPE for your recovery!

    Like

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