It's my understanding that there is no genetic test for the hypermobility form of EDS. If, for example, your bone density is well below average (which obviously is testable), you probably have EDS. Honestly, I'm here and not in the other group yet because it's active and I believe they basically are the same thing. A rheumatologist diagnosed me with EDS, actually.

Right -- there's not a genetic test for that form of EDS yet; although I don't think bone density is conclusive for it either since there can be other causes for very low bone density readings.

At my genetic evaluation they basically did a symptom check and a family history. I was surprised, though, because I got a transcript a few weeks after the appointment and it seems that the doctor had written down quite a bit of misinformation in my family history (confusing who had what, forgetting about certain things like miscarriages, and even getting some of my info wrong). I was thoroughly disappointed by this, but I'm starting to get used to being disappointed by doctors.

i've got eds and hms. the doctors never told me i had hms, i was first diagnosed with eds (the vascular type) but then as i was delayed in walking and alot of other things and i was born with a dislocated hip my doctors did tests and said i might have hms but i'd have to wait till i was older, then when i was older i did what they consider a test for hms (the eds kind) and the doctors confirmed that i had it. mine is more a cross of vascular eds and hypermobile eds, but i honestly think that hms and the hypermobile eds are the same.

OOps, lost the last reply. Yes, so far no accurate test for EDS Hypermobile type. Try not to be scared. Stay strong (physically) TO PROTECT YOUR JOINTS, DON'T PLAY WITH THEM (THEY ARE NOT TOYS, DESPITE APPEARANCES TO THE CONTRARY) TAKE A LOT OF VITAMIN C, TAKE YOUE CHONDROITIN/GLUCOSAMINE AND CALCIUM AND TRY NOT TO WORRY.

sORR FOR THE CAPS WRITING, iM NOT SHOUTING AT YOU, MY KEY GOT STUCK!

Good luck,

LooseyMD
EDS Hypermobile type

yep i was definately diagnosed EDS over 10 years ago

to add to the previous post what i was told is that i was dianosed by a genetics Dr as type 3 EDS which is the hypermobile type. So in my opinion they are one in the same HMS and EDS type 3

My doctor diagnosed EDS and then I also went to a rheumie who argued that it wasn't EDS because my xrays were fine....she is a dumbass because the xrays are fine in EDS patients.

I'm kind of confused on the difference, if there are any. I don't have the skin strechability, but I have extremem hypermobility and all the secondary factors. The Rheumies say it's HMS.

Is anyone else in the same situation?

I too believe that my hypermobilility has something to do with EDS, I have a feeling I will have a hard time getting a diagnosis because I too do not have the stretchy skin but my skin is very translucent, i always thought i had bad circulation in my legs but now i think it has more to do with being able to see all the blood vessels and veins. I have a hard time believing the BHMS. I think there is always an underlying cause they just do not know what it is yet. I am going to see geneticist in a few weeks hopefully i will get some answers.

I went for genetic testing and nothing came back, she just said that I had EDS, the rhumotologist says I have BJHS but the genetasist said there was no genetic test for the hypermobility type that they just do a symptom check and a family history. She was very interested in my knees and they bend way beyond what they should. They were just concerned mostly about vascular EDS but it came back nagative. I am going back to the rhumotologist because I am getting worse and she said I shouldn't so I should have an appointment in 2 to 12 months, and yes I am in Canada hense the long waiting list

I'm very very new to this. Does your fat content/amount affect how visible your blood vessles are? I've had many healthcare professionals say that I am hypermoble. But my rhumeatologist (sorry for my miss spellings) said I do not have EDS, but my GP is disagreeing with her. So I'm kinda clueless hear. I have spider veins visible since at least 16, could "walk backwards" - my feet would be facing backwards, but I would be walking forwards ever since I was born, and other things. but my skin too is not very elastic. But much of the time you can see what I think are my blood vessels off and on. It looks like I have a molted coloring on my hands... (hard to describe) but like I believe you see the small blood vessels because they are darker and they are all over the top of my hands. I've noticed it more so when I don't feel well.

Anyways this is probably a very confusing post. But any basics about hypermobility and EDS would be very much appreciated! Thanks :)