Ehlers-danlos

[carinara]

i mean, if you have vascular typ of eds, there must be some symtoms that come with it or not? I don?t bruise easily, i dont have joint problems at all, iam half spanish, so my skin is rather dark not light! Like i said, i never thought about the possibility of even getting tested for eds because i know my POTS Symptoms so well after so many years having them.

In the past years i had so many scanns of almost every part of my body, my aorta plus all the main heart and kidney veines are all ok, nothing wrong with them. I mean people must know somehow or feel something if they had this type of eds or not???

Like i said, iam quiet content at the moment, and get on with my limitaions due to POTS and so on. After i found a very good POTS Specialist i was sooooooo relieved, he must have said something if he suspected something like this going on or not? 5% of the world population have got a MVP. Thats not very unusual. The Mikroneurgraphy Test was good as well.

Should every POTS patient get testet for EDS? And whats with all the other disorders that can contribute to POTS?

It looks like i have the hyperadr. type of POTS (i just have to wait for one more blood test to return, but its almost certain)

Because i read on this forum that some people with hyperadr. POTS also get MCAD, i had a look into that as well...

But i don?t really want to drive all over germany again + all this stress with it, to find somebody who knows about eds if i dont really feel like having it. I mean i must notice something if i had it or not???? iam confused. Should everybody with POTS get tested for it???

Thanks

carinara

[jjb]

I couldnt sleep well last night because i wonder if my mild Mitral valva prolaps means that i have the vascular type of EDS?

What other symptoms come with this form of EDS? i have no joint problems at all, so i dont really know what to do now?

MVP is very common. I have mild MVP so do my sisters.

EDS symptoms can vary quite a bit. If you are concerned, I would go to the EDNF web site and familiarize yourself with the symptoms.

You can also look at the Beighton scale.

Here is a link to the EDS site:

EDNF I think the site lists EDS doctors around the world.

Here is a good article on EDS describing the different types: EDS article

and here are some pics of EDS:

EDS images

A person may not ever realize they have abnormal symptoms.

I have always bruised quite a bit, my joints were always clicky and hypermobile, I never considered my skin to be overly stretchy. I always thought all of these things were normal but it turned out I had many abnormalities join and skin wise.

[MightyMouse]

VEDS patients will have nearly translucent skin, bruise very easily and extensively from minor trauma, are not usually hypermoblie except for fingers and toes, have thin subcutaneous tissue (so skin is very thin), little scalp hair. See EDNF.org's site for more information, but it's likely if you had VEDS, you would have noted bruising.

Nina

[MightyMouse]

Here's a link to the EDS types on EDNF.org

[hollie]

Is it possible for one family member to have one form and another family member have another? My sister fits almost all VEDS symptoms, I have some of those, but am very hypermoble, which usually isn't associated...

[Maxine]

Please go to EDNF, and you will find more extensive answers to your questions. I was surprised at how my people had vascular complications who did not have "vascular type" (VEDS) EDS. This doesn't necessarily mean your going to have an artery that will rupture, but I'm told that all types of EDS patients have their aorta screened by having regular echo's done on their heart. When I went to Cincinnati they did an extensive echo, unlike echos I had done in the past.

I wouldn't panic about having a life threatening form of EDS. However, it is important to have a geneticist examine you for EDS.

Maxine :0)

[carinara]

thank you all for your help.

When i read through the EDNF site, i find that i dont really have any of the symptoms listed, exept maybe a little hypermobility on my feet (but iam not sure). All the other symtoms that are listed under VEDS i dont have. (Thank god). So should i still try to find a doctor to do some tests?

Reading through some german EDS sites it seems as if you only go and see a doctor if you have the listed symptoms.

thanks again

carinara

[mkoven]

for what it's worth vascular eds is one of the more uncommon types of eds. as maxine said, though, other types can have vascular issues though. POTS, for example, is basically a vascular issue, at least for those with eds, if I understand correctly.

[Maxine]

From what I have been told--------(vascular involvement) is more the term used. Poor vascular tone caused the blood pooling. I get the blood pooling everywhere---not just my legs.

I also heard classical EDS can have intestinal complications, but I know lots of people with hypermobile type who have all kinds of intestinal problems also----but then again so do POTs patients.

Also, I want to add this link to Dr. Tinkle's book on EDS:

http://stores.homestead.com/hstrial-LDarr/...t-of/Detail.bok

Maxine :0)

[MelissaCrystal]

I think a lot of people don't understand that POTS is just a list of symptoms that many, many disorders can cause. There are people who have POTS that can only attribute it to a mystery case of Dysautonomia, (perhaps caused by a virus, pregnancy, or puberty for example). But for most people, POTS/Dysautonomia is -caused- by something else, like a deficiency, mast cell activation, EDS, chiari malformation, the list is VERY long.

I try to encourage people to never give up looking for the cause because it can be something that can be corrected, or maybe something that has a specific set of treatments that work better in controlling the POTS! I'm thinking that most people are confused and just treat their symptoms rather than looking for the bigger picture. So I say definitely go to a doc that knows about EDS and find out if you fit the criteria, and maybe go get tested. Definitely do a lot of research yourself on other causes too if you're curious---the more knowledge you have on the subject, the easier it will be dealing with docs!