Friday, June 5, 2009

In a nutshell...

   I'm new to this whole blogging stuff. I have my notes on Facebook, but that's about it. So, I decided it is time to join the army of people who post their journey. Mine may not be as dramatic as others, but it is still long none-the-less.  Every Saturday I will post a segment that goes into detail about one of the diagnosis that I have, until I finish them all ,then I will have to find some other way to entertain you! 

   So, here's the abbreviated version of it... 

The doctors at the Chiari Institute in New York suspect that I have Ehlers-Danlos Syndrome. EDS is a rare connective tissue disorder that involves near about every aspect of the body. Because of this I have hypermobile joints, including those that are the core support of my head, the cervical spine... I'll save the rest for another day...
Here is the "so far" list of my diagnoses:

Ehlers-Danlos Syndrome
Craniocervical Instability
Retroflexed Odontoid
Basilar Invagination
Tethered Spinal Cord
Neurogenic Bladder
Possible Postural Orthostatic Tachycardia Syndrome
Chiari Malformation
Carpal Tunnel Syndrome
Cubital Tunnel Syndrome

So, to put it all together: I am a BobbleHead with Loosy Goosy Joints and a pain in the.......... haha. 

I have so many appts scheduled for the next two weeks!
June 9th: Cardiologist at 9, Genetic Dr at 2
June 11th: Orthopedist at 2
June 12th: Primary Care dr (guess I better tell him what's going on...haha)
June 15th: Physical Medicine and Rehab dr.

And so many more things that need to be done... I still am not sure if I should find a new neurologist or confront the one I have... 
Well, enough chatter for now, tune in every Saturday for a layman's description of each diagnosis.                                                                                                                                                                                  TTFN!

1 comment:

  1. Hey, I'm your fist comment poster!! =D

    Just commenting to let you know that your blog is amazing (and to be the first commenter... but mostly because this blog is amazing) Where did you get "uncommonly disconnected" from? Did you make that up? Because that's pretty cool..

    A BobbleHead with Loosy Goosy Joints and a pain in the..........WHAT?!

    <3 ya! Stay strong.
    (p.s. it says I'm anonymous, but I'm really christie-lynn)