Ehlers Danlos Syndrome, MCAS, POTS, and MALS

I can completely relate to your experience, especially it taking a toll on mental health. And that's crazy--just because something doesn't have a cure, doesn't mean it can't be managed. That makes no sense. I'm so sorry that happened to you.

A few things just in case it might help someone here: I corresponded with someone on the EDS support group on the website Inspire. (I won't post it because sometimes I've done this on other forums and my post gets blocked, I guess for advertising? But you can easily Google it), and they mentioned they see Dr. Alexandru Barboi at Endeavor Northshore in Illinois. He's a neurologist and treats POTS. I've heard positive things. It might not help with the EDS directly, but I've seen his former colleague and she screened me for EDS, so they may be able to help with coordinating care.

Lillian Holm is a PT in Evanston, IL, who specializes in hypermobility. She offers online consultations for out-of-state patients.

EDS.clinic is a new telehealth clinic that just opened in February. I don't have any experience with it, and it's very start-uppy, but the co-founder has EDS, which seems promising. I'm on their waitlist.

I have been to the EDS Clinic in Jacksonville, and unfortunately I didn't have a positive experience. My workup/consultations are currently on-going, and it's been a year because there's been a lot of misinformation, poor communication, and lack of follow-up regarding scheduling anything that came after my initial in-person evaluation. I've said elsewhere on this site that I don't think they have bad intentions; I just think they need more administrative support because EDS patients are all complex and require multiple consultations across various specialties.

It was valuable to get a diagnosis and they offer genetic testing, if indicated. So it is worth it if you need a diagnosis since it's so freaking hard to find someone willing to go through the diagnostic criteria. I hope that the others on this thread who have planned appointments have a more positive experience than me. Hopefully, they've been able to fine-tune their protocol.

I am so sorry your had a poor experience at Jacksonville. Especially, since it is said that

They even have two clinical trials for hEDS going on there as well.

I know through Invatae you can get a genetic test done, (They have an EDS one (which we know hEDS does not have a current genetic marker) as well as a connective tissue panel, without Dr referral and go off of your income. I might look into that.

I will look into that new telehealth. Thank you for all the other recommendations as well.

There is a doctor and Cherry Creek Colorado her name is Dr Jill Scofield she specializes in pots PDS and a whole bunch of other specialty diseases you could call her DDS too he has EDS . I know she'll do a one time and visit in the office still a whole bunch of lab tests and she does a whole bunch of televisits too she'll get to the bottom of what she had she is a very good doctor she has very good reviews a seller at another hospital but she opened her own practice and Cherry Creek Colorado her name is Dr Jill Scofield.

There is a book out there on Amazon it's called the paintings of phenomenon the fainting phenomenon book 📖. It talks a lot about pots and a different medical stuff it has a lot of different stuff in it you can buy it on Amazon. About the book and it gave me a lot of insight and it gave me a lot of tricks and it helped me a lot even though I probably they think I I it's secondary to what I have they think now I have Eds I'm waiting to see the eds doctor here and Colorado and I'll be about 18 to 21 waiting.... A hip doctor at Costco as final of the Rockies that figured that I have EDS because my hip was torn and I had in hip impingement and I have very sexy stretchy skin and I have very bad my joints don't fit together and he was like I'm not doing your hip replacement your hip to fix your hip because you need to see the eds doctor. Your joints are too loose but after you see the hip doctor in 24 months I'll probably give you a whole new hip replacement. But best alike on your journey on what she had and prayers to 🙏🙏😇😇

That's great that you found someone...not so great that it's such a long wait! I'm impressed the surgeon caught the hypermobility. Most providers I meet, especially orthopedists, with the exception of PTs are completely unaware.

The doctor's name is Joshua Snyder from OCR . And a northern front range. The OCR place has helped me the most and got me a lot of stuff figured out for me and her OCR doctors. The other the place that specializes in UBS is up in Aurora EDS. I have other posts about my heart and about about my GI stuff too I didn't know that and what would EDS but this doctor told me the OCR
doctor or my immune system to and other things told me it said yep that sounds like he .EDS. he asked me have you been tested for it I said no and then he said here is a doctor but has 18 months to 24 months waiting list I'm going to get your referral to go to him and when I looked it up I said wow that makes sense from my heart problems to my GI problems to my immune system problems I've to my pot problems to my low blood pressure problems to everything I feel like I was going crazy but now I know I'm not with all my health problems it's probab EDS A NEUROLOGICAL CONDITION CALLED DMD. TO BE TESTED BY WHAT CAN ADULT CONGENITAL TESTING JUST LIKE EDS2 AND SAID IT'S DMD ARE EDS AND IT SOUNDS LIKE I HAVE MY SYMPTOMS FROM MY I HAVE A LOT OF TINGLING AND TROUBLE WALKING TOO SO IT'S ONE OF THE TWO BUT IT YOU GO CRAZY WHEN DOCTORS START CALLING YOU HYPOCHONDRIACS AND START CALLING YOU HAVE MENTAL DISORDERS AND YOU KNOW YOU DON'T SO HANG IN THERE AND DON'T GIVE UP AND I WAS GLAD THIS DR JOSH JOSHUA SNYDER SAID NOPE IT'S NOT IN YOUR HEAD IT'S A REAL CONDITION OF EDS OR DMD. BUT MY GOD HAS BEEN A GOOD GOD AND I KNOW HE'S TOUCHED MY BODY AND I KNOW HE'S PROBABLY HEALED IT TOO OR KEPT HIS HAND UPON ME.,🙏🙏😇😇😇

@crazykbl, I'm sorry that you, like other patients diagnosed with Ehlers-Danlos syndrome, are told "it's all in your head." EDS is a real diagnosis that can affect many aspects of your health. You may be interested in following the posts by Mayo experts in the
- Ehlers-Danlos Syndrome Blog https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/

For example, see this 3-part series:
- 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/
- GI Part III Bloating Treatment Options https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/gi-part-iii-bloating-treatment-options/