Rhiannons~Ekco said...
I am really curious if there is an actual condition the doctor can diagnose for this.
This problem is that Hypermobility is the actual diagnosis. It is just as real (of a diagnosis) as Fibro or Sjogren's. The problem is that most doctors (even PTs) lack the understanding of the difference between hypermobile joints and having Hypermobility Syndrome. One can cane hypermobile joints and not have Hypermobility, but in order to have the latter, you have to have hypermobile joints. Doctors that do not know any better think when you say you have hypermobility that you have a lose joint or two and do not think anything of it. Since Hypermobility is a syndrome (some of my doctors call it "disorder" and not "syndrome", basically, it is the same thing), it is a collection of symptoms (like my joints, eyes, my gut, my (maybe) ears and my skin).
Part of the problem I have (and probably most people) is that like most autoimmune conditions and CTDs, the symptoms all overlap. It is hard to tell if you have one thing or another, and (at least for me) the diagnosis can change every visit. Hypermobility has ALWAYS been something that the doctors have said though. It never changes.
I went to a geneticist to see if there was any testing that could be done to see if I have EDS and not just Hypermobility, but she said hat that particular type is not testable (yet) because they have not found that particular gene. They did do a thorough testing of my aorta and heart valves to make sure they have not stretched. They are fine. I do not know if I have it or not. I have had mixed opinions from other doctors.
There really needs to be a separate forum for Hypermobility.
edit: I asked her (the geneticist) if there was enough information to say it is possible that I have EDS, and she was reluctant to even say that. She just referred me back to my rhumy.