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....

My husband had EDS. I have done a lot of research on this since then there is an EDS Foundation. He was under the care of a rheumatologist due to the arthritis that it causes in the body when people have surgery they have to be real careful with this condition because of their thin skin and they are slow to heal and they don't recommend stitches they recommend Staples due to the skin being so thin I would do a lot of research on the doctors if you were unsure about them some are out there that are good and some not we did find some that didn't understand the condition I wish you the best

I am 61 and went to see an ortho for and ankle sprain and she said I have "benign joint hypermobility" because of the high degree of inversion range of motion I have in my ankles. She said I am hypermobile in my wrists and knees too. Nobody has ever commented on it before. I asked her if it could be something more than benign joint hypermobility like EDS and she just said "well that is a clinical diagnosis". I have bad migraines and asked my neuro about it . She said I have the appearance of many she has seen with EDS which she described as "lanky" but said that there really is no treatment so it does not matter if I officially have it or not.
I have osteoarthritis in both my wrists at the thumb and both knees and my neck is a mess and probably contributes to the horrible migraine. I think it would be good to know if some of this is EDS related, like maybe to keep our eyes out for other related issues?! I am going to ask my physiatrist when I see him what he thinks. I have a rheum appt in a couple months and will ask her, too. I do not know if there is someone local to me who really knows much about this or not.

My question is, is it important that I get diagnosed or ruled out for EDS or not? Is just realizing I have some hypermobility enough? And if not, why not? What needs to be done for this diagnosis? I want to go armed to my next appointments with knowledge to use in my discussions.

Thank you!

I would suggest getting under a specialist in EDS. There are many different levels of this condition. And maybe getting info from the EDS foundation, and reaching out to others is also a good way to navigate.

I think we should start a special section for "Doctors Say the Darnedest Things." I have been on a 15+ year search for a diagnosis (es) for what's wrong with me. It's only recently that I found out that EDS and POTS run in my family. I've had hyper mobility (undiagnosed) since I was a kid and just looked at it as a "party trick" to amuse my friends. I had no idea that it was a medical syndrome that causes problems over time.

I'm 75 now and have been diagnosed with dysautonomia. I'm scheduled for a tilt table test to confirm a POTS diagnosis and am searching for a doctor who has expertise in POTS/EDS. There are some near me (DC/MD), but it's hard to get an appointment.

I had a neurologist ask me why it was so important to me to get a diagnosis since they can just treat the symptoms! It was such a strange question from a medical professional. #1. Treatments differ depending on what the disease/disorder/syndrome is. I'm on a ton of medications right now, some of which exacerbate the problems. EDS/POTS/Dysautonomia all affect the whole body, so just treating one part of it (e.g., migraine, arrhythmia, neuropathy) isn't as helpful as finding out what is causing the symptoms. Also, if these diseases go undiagnosed, we won't make much progress in understanding them. I like to think that the next generations won't have to go through what so many of us have in finding answers.

Here's a link to what the Ehlers-Danlos Society has to say about Hypermobility Spectrum Disorder vs. EDS. I hope it's helpful.
https://www.ehlers-danlos.com/what-is-hsd/

How can I get in to see a hEDS specialist? I’ve lost my quality of life from the neuropathic pain, severe POTS, and chronic fatigue. I signed a DNR and filled out a will for my family. I have 35+ specialists in Houston where three have referred me over to Mayo but my case was denied. My father died @56 from this, my cousin lived to 50, my grandmother was 50, her other son was 35. I’m 48 yo now and in dire condition. How can I get my foot in the door at Jacksonville Clinic to be seen for a connective tissue disorder and Hashimotos which has lead me to the door of dysfunction? My symptoms are as bad as my father’s right before he was permanently bedridden. My children have this also. I have been fighting for a pure diagnosis but all of the Houston doctors don’t deal with hyper mobile connective tissue disorders. I keep getting passed around and it’s been seven years of worsening symptoms. I finally made it through SSA to permanent disability, so what I seek is a pure diagnosis and a possible treatment Plan, if there is any for this inherited condition.