Ehlers Danlos Syndrome - Who is the best doctor to see?

Hi @tajahar, I can hear your concern for your daughter. This must be so hard to watch. I moved your message to this existing EDS discussion:
- Ehlers Danlos Syndrome - Who is the best doctor to see? https://connect.mayoclinic.org/discussion/ehlers-danlos-syndrome-new-diagnosis-1/

I did this so that you can easily connect with other patients and parents with EDS, like @moms34eds @4grace @lovemyfamily2003 @jthigpen @healthhopefreedom @needrelief @csalter @dianeehlinger.

EDS is a complex condition that often requires a team of specialists in different departments including gastroenterology. The Mayo EDS team recently posted these two blogs:
- Gastrointestinal Concerns for EDS Patients https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/gastrointestinal-concerns-for-eds-patients/
- GI and EDS/HSD Part II https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/gi-and-edshsd-part-ii/

Tajahar, have you considered getting a second opinion at the EDS specialty clinic at Mayo Clinic? Mayo also has specialists who treat superior mesenteric artery (SMA)syndrome.

I would add that you find a Ehlers-Danlos/hypermobility physical therapist to keep your muscles strong and limber as part of your treatment plan. https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/diagnosis-treatment/drc-20362149

Hi- Since a few of you on this thread have mentioned being seen at the EDS Clinic in Jacksonville, I was wondering if anyone had experience with either the POTS or Fibromyalgia 2-day programs they often refer patients to, in Jacksonville? I have hypermobility spectrum disorder (HSD), POTS, along with other co-occurring conditions, and recently received a Fibromyalgia diagnosis (though I'm least certain of that part).

I can definitely relate to how challenging it can be to find appropriate specialists--first to get a diagnosis, and then to access treatment. I've been really lucky to have amazing PTs at home, but I haven't been able to work with someone with specific experience with POTS, hypermobility, or fibromyalgia. It's why I'm intrigued by Mayo's 2-day programs, but I haven't found any information about what each entails. I've only seen information on the lengthier Pain Rehab program.

Thanks to all of you for sharing your stories!

I too have hypermobility ED syndrome. I was a good gymnast and great at yoga, and of course back in my youth there was no such thing as checking kids out for such congenital abnormalities. (scoliosis too).

Consequently, I developed all kinds of loose-jointedness, requiring surgery, for example: extreme kyphoscoliosis (required major spinal reconstruction, which left me with considerable nerve damage. That included double incontinence,
perineal numbness and also numbness of most of back - cauda equina syndrome.

Also three knee operations, double bunionectomy, reconstruction of basal joints of both thumbs, and I'm struggling much belatedly to strengthen the muscles around all my joints. My hips are kind of giving way now too. (If I didn't start upper body strengthening, I could never get up after I fall down - all too often).

Best to all you EMS patients!

Hi! I have hypermobile EDS and I am scheduled for a laminectomy on May 14. The surgeon has suggested that there is a very good likelihood that I will need a fusion operation performed on both L4 and L5 after this procedure... While the surgeons and spine specialists with whom I have consulted, they all give a nod to 'EDS' when I mention it, (which is much better that the recognition even a few years ago!) But I just don't think they have a deep understanding, and can advise me thoroughly about the expected out come and recovery period. The surgeon with whom I have planned to go ahead says that I should be back to my regular life in 3 weeks!? I'm just not so sure....