Ehlers Danlos Syndrome (EDS) Treatment in Arizona?

Hello @thebean,

I'd like to invite @pthilges, @jholland, and @gigirl84 as they all have experience with EDS and may share how they found providers to help them get diagnosed. You may also be interested in following the EDS blog as well:

Ehlers-Danlos Syndrome Blog
- https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/

@thebean, how are you currently doing with your EDS? Have you already been diagnosed and are looking for treatment options?

When I go to the website it says it is at the Jacksonville location of the Mayo Clinic. Using my friend Google I found this:
https://complexneurology.com/
I know nothing about it other than finding it on the website but it at least gives you a starting point. The full name is the Center for Complex Neurology, EDS & POTS.

Hi,

I have EDS, specifically L-HSD. I was diagnosed at Mayo Jacksonville. Jacksonville is the only location that has the hyper mobility clinic. I have heard Baylor has a hyper mobility clinic as well that would be closer to you. If you’re just looking for diagnosis, you could speed the process up by getting a local provider to order the Invitae 92 genes connective tissues panel. 13 of the 14 sub types can be found on that panel. If your results come back negative, then you could still have the gene negative one that everyone seems to have including myself (HSD and hEDS) you would still need a clinical diagnosis based on exclusion though. The great part about the hypermobility clinic in Jacksonville is they have a patient education program. It’s a series of online classes that teach you as much as science seems to know about it. At the end of the day it’s just to help you manage things as the pathophysiology of EDS is still unknown and there are no concrete solutions

There is someone in California that I aspire to see one day Dr. Tina Wang, you might want to look her up too. She specializes in fascia and does “Hydro desiccation” or “Hydrodissection” , if I said that right. I forget how it’s properly spelled. People with EDS have a wide range of weird problems and for me personally with the problems I have, my chronic 20 year long tenosynovitis issues that stem from EDS, I believe she can help me through these procedures. After the Hydro dissection procedures which to my knowledge would flush out all the myofibroblast’s that have replaced regular fibroblasts in the extra cellular matrix, then I would do PRP to heal, as my issues are with tendons and ligaments. All this will be out of pocket, so I’m saving for it.

Good luck to you, I really mean it

Jack

Maybe check with Ehler Danlos foundation for providers?

Thank you so much for all of your responses.
I am in my 50s and just piecing this EDS puzzle all together myself. It's been a long journey.
I thought I lucked out because Mayo takes my insurance but when I spoke with the receptionist she indicated there are no EDS doctors in AZ. Then I got hopeful again when I saw some of the posts saying there are indeed AZ doctors. If anyone could give me a specific doctor's name that does treat EDS I would be grateful. I don't fault the receptionist because if there is no EDS department it would be hard to know where to direct me. We did search in the categories of connective tissue disorder, pain management, and physical health (or something like that) and she got the error messages "no EDS doctors" but I am thinking if I had the specific name of the doctor then perhaps I could make an appointment after all!

Here is more about my story in case anyone can relate, thank you to all of you that have shared yours - it is so wonderful to not feel so alone in this. I've been to countless doctors, specialists, physical therapists, naturalists, neurologists, diagnostic testing, emergency rooms and never knew exactly what I had.

I have a positive biopsy for small fiber neuropathy. My EMGs of legs and arms always some back "severe nerve damage", I'm hypermobile, have gastro issues, have had pelvic floor disorder. I've had surgeries to address my hip pain (not helpful). I've also had orthostatic blood pressure and pain all of my life. When I get sick I often have difficulty with a racing heart. Diagnosed fibromyalgia, complex regional pain syndrome, there was a speculation of Guillain Barre after I had Bell's Palsy but I don't think it stuck. I've had every literally pain procedure (cortisone shots, nerve blocks, nerve ablations, etc.). I get about 1 a month. I went down the pain pill road and do not care to do that again. My neck is bothering me the most right now. All of EDS sounds like me. I don't know if I should try to find a specialist, I appreciate the info about AZ. It doesn't seem there is a typical treatment plan and may be a waste of time and money.

Hello. Mayo at Jacksonville, Florida has a clinic. A new EDS and Hypermobility Disorders Center recently opened in Charlottesville VA. https://www.uvahealth.com. 434-243-8200. If you contact The Marfan Foundation, they can give you information about a doctor in your area who can diagnose EDS. EDS is included in the Marfan Foundation list of connective tissue syndromes. https://marfan.org. 516-883-8712.

Thank you!

@thebean, @colely is right. There is a specialized EDS Clinic at Mayo Clinic in Jacksonville https://www.mayoclinic.org/departments-centers/ehlers-danlos-syndrome-clinic-florida/overview/ovc-20522975

Also see the information on the Mayo expert EDS blog :
- Ehlers-Danlos Syndrome Blog https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/tab/newsfeed/