Forum Replies Created

Viewing 4 posts - 1 through 4 (of 4 total)
  • Author
    Posts
  • Pashta
    Participant
    Post count: 4

    Sure, it’s on a website called Arachnoiditis Hope and the title of the article is “Ehlers-Danlos Syndrome”.

    Pashta
    Participant
    Post count: 4

    Thank you for the response, Dr. Corenman. It was Dr. that looked at my MRIs and wrote a letter stating he believes I qualify for a diagnosis of Adhesive Arachnoiditis or Cauda Equina inflammation. He told me that from his experience over the years, patients with EDS can degrade into AA. It is very new research he is doing, perhaps that’s why you are unaware of it. He sure sounded like he knows what he’s talking about to me. He’s doing the research through his Tennant Foundation. My pain is really bad, far more than just arthritis could cause in my opinion and personal experience. I have been told I have facet arthritis.

    Pashta
    Participant
    Post count: 4

    Hi DNanaLynn, I have hypermobile Ehlers Danlos Syndrome as well and was told by a knowledgeable doctor that looked at my MRIs that I qualify for a diagnosis of Adhesive Arachnoiditis or Cauda Equina Inflammation and I also have random burning sensation on the outside of my thigh, just above the knee. It’s not a big deal, doesn’t bother me that much. A PA once told me he thought my issue was meralgia parasthetica as well! I find it extremely interesting that you have the same issues… There must be something to it. Hope someone sees this coincidence and it helps somehow.

    My main issue is my lower right back was injured a long time ago and never healed, I’m in a lot of pain constantly but I’m unsure if it’s from the EDS, the injury or the possible AA. Whatever it is, it hurts horrendously and has messed up my life. I hope you don’t have a similar pain? Has the burning feeling returned on your thigh like mine has for years? It just comes and goes seemingly randomly for me for the most part, but almost always happens when I lean forward, without bending over, at the sink to brush my teeth.

    Pashta
    Participant
    Post count: 4

    I’m new, I hope it’s ok to reply to another’s question here? I know hEDS is rare or at least rarely diagnosed, so I think I might be helpful here since I have been diagnosed with it as well. I have done a LOT of research on the subject and must say that yes, our type of EDS absolutely interferes with healing. I have personal experience with this from before I knew I had EDS. I had surgery and the healing was longer and left terrible scarring. I believe my main back problem is the lack of proper healing from an injury years ago, it seems to be how many people find out they have EDS is that they get injured and never heal or not properly. I was told to always tell a surgeon about EDS because it makes a big difference, for example I bled profusely during my surgery according to the doctor (EDS causes that). Hope that helps!

Viewing 4 posts - 1 through 4 (of 4 total)