Monday, March 10, 2008

A Poke in the Eye with a Sharp Stick

Ok, it wasn't my eye, but it was most of the rest of me. I finally got to see the neurologist today. We spent a LONG time taking a health history, not only me, but my family tree - parents and sibilings too. Then came the exam. She listened to my back and chest, took a long time checking my eyes, how they tracked and how the retina looked. Then it was sensation - first a tuning fork placed various places - could I feel the vibration? Tell me when you can't hear it. Everywhere from my forehead to the joints in my toes. Then a touch test with a cotton swab - nose to toes again. And then a pointy stick. I kid you not - she poked me with a sharp stick from nose to toes too.

So what did we learn? Well, we're not 100% sure, but we're pretty sure this is a hereditary peripheral neuropathy. It's not MS or vasculitis, or lupus, etc. It appears that my nerves (not the insulation on them, but the nerve itself) are degenerating, and no, there's no treatment. But on the other hand, it's taken me 40 years to get to this point, the pain is not yet enough that I need to medicate it yet, so if I live long enough to be debilitated from this, I'm doing pretty well.

There's still a few tests that she'd like to do, to rule out any brain involvement. They took blood for a laundry list of tests (10 vials! New record!) and I have to get my head examined have an MRI. And there's a few lab results I have to try to get out of various doctors.

So the good news is that it's none of the hideous things I spent yesterday evening reading about. The bad news is, I have to live with it. Not so bad. Could be worse.


Jill in MA said...

Oh my, that sounds exhausting! I wish I could give you a hug (and tell you to take a good long nap while I deal with your kids for a day... or more.) Just the thinking about all the things it could be must have worn you out. You're right, it sounds like it's not so bad, and the plus side of no treatment, is, well... no treatments! And knowledge is power. Lots of love from me!

ooolia said...

Yes. I agree with Jilly. Me thinks I want your cul de sac dream so I could be there to share this stress with you.

Lots of love and xxooxx

Lisa C said...

Sounds like a very intense day! I'm glad you got through it. Wish I was closer too, but definitely was thinking of you today!