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1448748 tn?1312956208

I was finally diagnosed with EDS, question is pertaining to the type

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.
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620923 tn?1452915648

  Oh I see, that would make me curious as well...also as to y they did not check u for this when that happened.....

I have asked many times y the PT techs did not recognize it either, I would think they should know...JMHO.
Helpful - 0
1448748 tn?1312956208
I have had uterine tears in childbirth and was on bedrest for my first child. I had a lot of bleeding for the first 20 weeks and had early delivery with my second.  I have a lot of pain in that area as well and had pre cancerous cells.
Helpful - 0
620923 tn?1452915648

  Some of these r also criteria for the other types...so, I would not worry unless u had some tears  of areas that is abnormal...ne issues with child birth....if not, I would venture to day u may be ok....

try to relax until u get a deff dx on which one u have....I  hope u keep us posted.
Helpful - 0
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