I now know that I fit the criteria for EDS, I scored a 5 on the beightons scale and I have had joint and muscular pain for 3 or more months, that is how I was diagnosed by my rheumatologist... but that rhematologist cannot test for the vascular type of eds, which is the life threatening type.There are 10 different types of eds, one is the vascular type and can cause arterial ruptures and median age is 48. I don't know yet it if causes pain like the hypermobile type, that is something I am trying to find an answer to but am having trouble finding. I am concerned that I have the vascular type which is the most dangerous type, but I have severe pain as well and am wondering if this is a good sign that it may just be the hypermobile type.. let me know if anyone has any input on this?
I have almost all of the minor criteria to fit a diagnosis for the vascular type:
Minor diagnostic criteria for EDS type IV include: IT STATES YOU ONLY NEED 2 AND A POSITVE DNA TEST...
Thin, translucent skin (especially noticeable on the chest/abdomen) I can see all of my veins, always thought was normal.
Characteristic facial appearance (thin lips and philtrum, small chin, thin nose, large eyes)
Acrogeria (an aged appearance to the extremities, particularly the hands)
Arteriovenous carotid-cavernous sinus fistula( DO NOT HAVE)
Hypermobility of small joints
Tendon/muscle rupture
Early-onset varicose veins
Pneumothorax/pneumohemothorax( i DO NOT THINK I HAVE)
Easy bruising (spontaneous or with minimal trauma)
Chronic joint subluxations/dislocations( I DO NOT HAVE THIS ONE)
Congenital dislocation of the hips
Talipes equinovarus (clubfoot)( I DO NOT HAVE THIS ONE)
Gingival recession
..so I am worried that I may have the vascular type due to the unique qualities that it has.. what I am wondering is if these overlap with the other types like specifically the translucent skin where I can see all of my veins in my body, the high palate in my mouth and the unique facial features.. and my hypermobility was limited to my smal joints..none of my larger joints except my hips. I feel my heartbeat in my main artery running down my stomach pounding and its like a ball above my stomach.. I get pain in that area.. and I am worried if I have this type it could be a sign of arterial rupture or swelling.. My heart sometimes just goes bizurk just after doing simple things and other times its completely fine.
any input would be appreciated.