Monday, July 18, 2011

Brain Fog, much?

Oh boy, it's 7:50pm... 
I almost forgot to post for the lovely Rhianne. 
Brain fog much?!

Anyways. These past two weeks have been a roller-coaster ride.
This last week I had a full autonomic workup done, EMG, NCV testing and more.
The only new thing I found out is that I have small fiber neuropathy.
Boo, but it explains my tingling feet/cold feet, hands, etc...
For more on this, check out my blog post here

Also, I have just been officially diagnosed with Ehlers-Danlos Syndrome III (Hyper-mobility Type).
I scored a 9/9 on the Beighton Criteria (my mom was diagnosed as well)
**her collagen is so faulty that her organs are not stable in her body & mesh nets are used to keep everything up :/ **
We are going to be tested for Vascular Type in a couple weeks to rule it out (chances are VERY low) but it is important to rule out.
It explains SO much and my neurologist and geneticist are working together to piece out my treatment.

I have always wondered why I have POTS and not knowing was fairly bothersome for me.
Even though my symptoms came on rather suddenly and were triggered by my wisdom teeth removal, overall, the root cause and biggest trigger of dysautonomia (for me) is the collagen defect known as EDS.

My question to you all is what kind of POTS do you have?
Partial Dysautonomic 
- or -

Also, do any of you have Ehlers-Danlos Syndrome?

Now for your questions!
I think the only one left is LB's question...
"Do you struggle with eating habits because of your dysautonomia?"

Yes. I have always struggled with my eating habits...(not always necessarily because of Dys though). I have have GI troubles since I was seven years old and been on steroids for years to control my colitis :/ Every time I would eat, I would get so much pain, I was constantly in the bathroom (not fun) and my weight would drop drastically. I was drinking boost for awhile and just trying to get all the nutrients I could. It is better not, but not great.

Take care everyone :)

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