Tuesday, June 22, 2010


I saw my geneticist today.

He's baffled.

He has no idea what could possibly be wrong with me now, but he's going to send me for some follow-up blood work. He wants to check the levels of calcium, magnesium, and the a-word molecules produced by the liver that are grabby little bastards which might be stealing my drugs from me. Seriously. Don't look at me like I'm off my rocker...

Albumin... That's what they're called. They're collectors. Sticky ones. They snatch things out of your bloodstream, like calcium, magnesium, prescription drugs (and eventually re-release them into the bloodstream)... And my albumin levels were on the low side of normal a year ago, when my iron was low, and now my albumin levels are higher than the high side of normal, and my iron levels are normal (as of a couple of months ago) and the geneticist thinks that low calcium could possibly be a cause of the sudden twitchiness.

Or it could be post-viral-something-or-other.

He also agrees with me that there is a possibility it could be iron built up in my brain... And he thinks "they" would call us both crazy if he were to request the test necessary to rule it in/out. Apparently it's an odd test to request. I think he said it was the old version of an MRI, or something.

Either way he wants to wait for my follow-up with the Neurologist, and the blood work, and whatever tests the neurologist orders before I have a follow-up with him again.

He also says I should either stop taking the Clonazepam, or go see a psychiatrist. Because I was sitting there crying... Again... But I'll wait until I see the Neurologist lady, and see what she says about drug options.

And finally, for those of you not keeping yourselves updated through my comment section:
Yesterday *(Last Thursday now)* I fell backwards, had the twisty-spine thing (Dystonia? Ataxia? I DON'T F***ING CARE ANYMORE)landed on the front of my left shoulder, and it hurt so bad I couldn't move enough to get the weight off of it. I bawled my eyes out, and screamed a bit of the frustration out. I was at work when this happened, and had to take 15 minutes and 2 smokes to calm down enough, and stop crying enough to get myself an ice pack.


Hotbrain said...

Interesting, I didn't know about albumin. Always fun to learn something new!

I just thought I'd comment to say that if you go off of the Clonazepam, you should do so very slowly... Stopping an anti-anxiety medicine suddenly cause actually worsen the anxiety. If you Google "clonazepam withdrawal" you will find info on this.

Hope this helps!


BubbleGirl said...

Thanks for the comment!

The stupid thing about the Clonazepam, and anxiety, is I have been more anxious since I started taking it. Side effects listed are "paradoxical effects" which means it could work the opposite of what it's intended to do. I've also been feeling drpressed, and it doesn't seem to be helping with the myoclonus/dystonia issues either. It feels almost like I'm bipolar-ish... Lots of anxiety, and depression. Not so much happy though. I would like some more happy.

About the Albumin, I love the way the geneticist described it. I'm pretty sure he called them "grabby little bastards."