Worried about Vascular Ehlers Danlos syndrome

[ChicagoDude617]

I am not really close to anyone is my family, so I have no idea if I have family history of EDS.

But vascular EDS is the most severe form of EDS and I am scared I have it.

I am hypermobile, although it i'm not crazy hypermobile. I have stretchy skin. I can see veins underneath my skin. I have joint pain at times. I have problems with my tricuspid and mitral valves.

I am terrified that I have vascular EDS and can pretty much die at any moment.

Can somebody help me out with anything? I don't even know what to think right now I am so scared.

[selmaS]

  Chiari is a malformation of the skull which happen enutero and causes the cerebral tonsils to herniate onto the brain stem and spinal cord causing compression.....the compression in turn  causes may other issues to ensue...drop attacks, off balance, vision disturbances, breathing and swallowing issues, but the Hallmark is headaches and most  r triggered or flare with strain...such a s sneezing, laughing, coughing or other functions....

  We do have a chiari forum here is u want more info-http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

As Suz said u may just have JHS or EDS...and that would be enuff....but, it is always good to be educated on related conditions just in case u get thrown a curve ball.

   Good luck and do post an update

       "selma"

[suzsibs]

Hi
I was told a few weeks ago that I have joint hypermobility syndrome and like you I do not know what type, please do not worry I know it is difficult, as Selma said find a specialist in EDS and find out what type you have. You may be worrying needlessly, you may just have the hypermobility type.
Keep us updated.
Suz

[ChicagoDude617]

I'm hoping to see a doctor soon that knows a lot about EDS. Maybe I can get some answers then.

And no, I never had a brain MRI. No doctor has ever mentioned chiari. What is that?

[selmaS]

  Well there is a skin biopsy they do to determine the type of EDS u have...ur Dr may not have been a EDS specialist...u may want to look for one that does specialize in EDS so u can get more in depth help.

  The POTS dx may possibly be connected, and could be a coincidence....

  Did u have a brain MRI?....were u checked for chiari?

   "selma"

[ChicagoDude617]

Also, for what it's worth...

I was DX with POTS a year ago and 2 of my heart valves aren't very functional.

I don't know if those are associated with VEDS.... but yeah.

[ChicagoDude617]

Hey Selma, Thanks for the response and welcome.

I'm 20 years old btw.

I did see a doctor, my rheumy. He said he thinks I have EDS but never said what type he thinks it is. I had no idea what it was so I didn't know what questions to ask at the time except "what is that?" he told me "There a few forms of it and it's a connective tissue disorder."

That was it.

So when I got home, I looked it up and I found the vascular type and I feel like I share more symptoms with that kind than the other kinds and am now flipping out

[selmaS]

  Hi and welcome to the EDS Group.

I know it is so easy to DX our selves via the net, but u should go to a Rheumatoid Dr and get testing...even without family history u should be able to get answers and hopefully alieve some of ur fears by being proactive in ur care...doing nothing but worrying will only increase the odds for this to take a wrong turn if u in fact do have that form of EDS.

Try to relax and go see the Dr.

Not knowing how old u r, but keep in mind, u were born with this condition and u got this far...stress can make ur condition worse...

Post an update once u see the Dr.

    "selma"