Jump to content

EDS


briarrose
 Share

Recommended Posts

I saw Dr. Grubb last year and he thought that I had EDS III as one of the components of POTS. I saw a hematologist this week that said if I haven't been genetically tested for EDS that I couldn't be diagnosed with it.

From everything I've read you can't test for all EDS, is that true or not?

Steph

Link to comment
Share on other sites

that's correct--you not all types of EDS are able to be tested gentically. Currently, EDS III is diagnosed via the Beighton Scale, which gives a rating based on how mobile certain joints are. You may want to peruse the EDS links that Michelle has under the "causes" section of the main DINET site.

I've cut and pasted a bunch of them below:

http://www.nlm.nih.gov/medlineplus/ency/ar...icle/001468.htm

http://author.emedicine.com/ped/topic654.htm

http://www.ednf.org/

http://www.dinet.org/links.htm#Ehlers-Danlos

Nina :), who also has EDSIII

Link to comment
Share on other sites

  • 2 weeks later...

Dr. Grubb also dx me with EDS Stage III. I have gone to several docs in Ontario who have said I am borderline EDS. I always have been very flexible and double jointed so I very well could have it. Stage III is a mild form and the better one to have of all the stages. If oyu do have it it's something you've had since birth so I look at it this way...I've had for 30 years and managed ok without knowing so now that I have been dx I try to just go on the same way cause I managed this long. It's nice to know but things don't change really cause you can't just develop it, if you have it you've had it since birth, you're born with it, it doesn't just appear. For me it added a missing piece to the puzzle but didn't change my condition after being dx with it. Nothing has changed since med wise or health wise just made things clearer for me.

Janette

Link to comment
Share on other sites

Janette thank you for your response. I would have to agree with you about having it since we were kids. I remember my mom always saying that I was double jointed and I am very flexible, I was good at gymnastics. But I was wondering if this was really EDS. I guess it doesn't matter too much.

Steph

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...