Ehlers-Danlos Syndrome Support Group
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.
So I am still working on my EDS diagnosis, it got cut short due to me losing my insurance.
any way, I was diagnosed with TOS several months back. I dont have the extra rib so they were kind of stumped as to why or how I got it, and as with all my other conditions just labeled it "idiopathic"
I was doing a little internet research and found that TOS seems to be more common in EDS, particularly type 3, which is what I might have.
So what I guess im asking is... how many of you have TOS? and if so what EDS type are you?
any way, I was diagnosed with TOS several months back. I dont have the extra rib so they were kind of stumped as to why or how I got it, and as with all my other conditions just labeled it "idiopathic"
I was doing a little internet research and found that TOS seems to be more common in EDS, particularly type 3, which is what I might have.
So what I guess im asking is... how many of you have TOS? and if so what EDS type are you?
it is Thoracic outlet syndrome
a fancy term for not getting proper blood flow and or nerve transmissions in your upper body. usually due to a physical defect or trauma to the area.
I also have bilateral brachial plexus which kinda goes hand in hand.
im looking at physcial therapy for the rest of my life since the quick fix for TOS is usually removing the extra cervical rib to open up the path between the shoulders and get better blood flow and i dont have that extra rib, so something else is causing it.