Obviously, I'm unqualified to diagnose myself with EDS, but there's several signs I'm seeing after reading the article posted here, and family members bringing it up as a potential cause/link to another medical condition of mine.
At the end of this month I have a new patient intake appointment with a Primary Care Physician (US healthcare unfortunately.) I'd like to ask them to help me determine if I might have a form of EDS. I've known since I was a child that I have hypermobility, but never knew EDS was even a thing or that it could impact other areas of health and the body, and the more I read into it the more "symptoms" I find that I just thought were odd but part of my funky physiology (scarring, bruising, digestion, foot pain have stood out the most.)
As I'm reading more and more into the forms of EDS and its traditional testing methods, I can't help but wonder if this doctor (or most others) will be hesitant or refuse to test for it. I'm not looking to get much more than knowledge for myself concerning the way my body behaves; I certainly don't expect or want a doctor to diagnose me and start throwing treatments on it.
This leads me to my question(s): Has anyone here that's been diagnosed with a form of EDS felt they were largely dismissed by their doctors, regarding EDS or testing? Also, for those that have been diagnosed, do you feel the diagnosis was ultimately helpful or hurtful to you and/or your treatment during medical care?
TIA
My significant other has EDS, diagnosed within the last couple of years by a rheumatologist. Since then, we've found some physical therapists are quick to dismiss us when they find out Ehlers-Danlos Syndrome is involved. There seems to be a rule that if they don't have experience with EDS, it's in their best interest to not try to help.
The upside is, doctors who know of EDS are suddenly much more invested in my SO's well-being on hearing they have it. The doctors end up doing what they can and recommending others in their circles who have experience with EDS.
From my view, it doesn't magically open doors, but it does help screen doctors for their ability to help out. Along those lines, if your doctor isn't willing to screen you for EDS with simple things like the Beighton scoring system, it gives you a good chance to find someone who is.
But overall, my opinion would be to not discount your ability to self-diagnose, especially if you have people in your life who are suspecting EDS may be involved. My SO and I see things in their daily life that a doctor would likely miss in our rushed appointments.
Best of luck with your appointment!
Thank you for your encouragement and sharing you and your wife’s experience!