1. Community
  2. Bones, joints and muscles
  3. Orthopaedic Disorders

Has anyone been diagnosed with Ehlers Danlos syndrome without genetic testing ?

Posted , 3 users are following.

Flutterbie57
Flutterbie57

I was sent for genetic testing about 10 years ago, but no help was available for the problem back then so I decided not to go through with the tests. Now they have discovered some relief for ED and I have just been referred again and I have been diagnosed with the syndrome, but without genetic testing. Has anyone tried the new option for getting relief for this ?

0 likes, 2 replies

2 Replies

  • amanda74902
    amanda74902 Flutterbie57

    Posted

    There is no genetic test for hypermobile EDS. What is the new option for getting relief?

    I'm only aware of physio and pain killers. I have HEDS too.

    • Flutterbie57
      Flutterbie57 amanda74902

      Posted

      Sclerosant prolotherapy injections. They inject it into unstable joints to help strengthen the joints. My hip area has been unstable for about 24 years and has created ongoing pain and other problems. I have used stretching and ongoing Osteopath/Chiropractor help to keep me moving over all these years, but now the A.G.E. virus has hit me too, the pain and problems are much worse, so I have chosen to try this treatment. I have had only 1 injection so far to see how I reacted to it. It went well so now I am on the waiting list to get several more injections in the same hip. If all goes well it should stabilise it (hopefully). Ehlers Danlos is not widely accepted within our medical system in New Zealand, and neither is this treatment . I am at the point where I will try almost anything to get some pain relief.

      Are you coping well with Physioand pain killers ?

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.