ehlers-danlos syndrome

[browncat]

anybody been diagnosed with this connective tissue disorder? i was recently diagnosed w type 3. having alot of trobles.

[sunorchid]

Thank you for reaching out to me with such sincerity.   I will try the yahoo site also :-)

[selmaS]

  Hi and welcome to the Chiari forum.

There are not many well informed or experienced Drs that know Chiari...and often it is dismissed when seen on MRI....often the symptoms are DX'd as MS when in fact those markers are not seen....more have Chiari then MS....

Chiari symptoms do cycle, so they can come and go, change after activities...or strain.....so can CSF obstruction change with inflammation, yes....AND  to your last question can EDS aggravate Chiari...yes...I have both....and a few others and it does seem one can trigger the other....to a point of not knowing what symptom is from which condition....

I know we have had a few members that have been tested and shown to have both Chiari and MS......do look into a Chiari specialist to make sure what is going on for you.

[sunorchid]

I have been diagnosed with ehlers-danlos and MS.  I'm now showing increasing symptoms of chiari malformation.  No one has ever looked for it in my MRI's for MS management or noted finding it.  I am a runner and dancer and now my symptoms arise and worsen with activity.

Can csf blockage be intermittent with inflamation?

Can EDS tissue and vascular issues aggregate Chiari I or chiari 0?

[Bethanyatg]

Hello there,
I also jhave EDS type 3 or also known now as being the hypermobile form. I am 41 and legally disabled because of the pain and problems that I have. There are several good EDS sites that you can go to for help. Two of them are yahoo groups which anyone can join for free. The first one is ***@****   CEDA is The Canadian Ehlers Danlos Association. It is run by a nurse in Canada that has EDS and she has done a wonderful job of posting new information on its site. I have come to know Jill personally and she has helped hundreds of people. The second group on Yahoo is EDSers.  ***@****   The group is a smaller group of people but if you type a problem you will get someone that has been or is going through the same thing you are rather quickly.
EDS is not as rare as was once believed to be.  Now about 1 in 5000 people have this disorder compared to when I was diagnosed (in the 70's) it was about 1 in 20,000 people. My older sister and my daughter both have EDS. My parents have been gone for many years and I will never know which one of them had EDS and passed it onto me. Had I known it would get this bad I don' t think that I ever would have chose to have any kids. Many of us are not able to carry an unborn child long enough to have a baby. I for one had two miscarriages early on.
I am sorry that you were diagnosed with EDS but please know that you are not alone. You can contact me ANYTIME by email.  ***@****

Take care and good luck.