Anyone live in Maryland w EDS?

I live in Glen Arm, MD

Gaithersburg

Downtown Silver Spring. Tests, clinical symptoms, and family history point to EDS, after years of trying to figure out what's happening to my body. I can't find anyone to confirm diagnosis. Johns Hopkins has closed their waitlist, Medstar network doesn't even list EDS as a specialty in a search for the DMV area, Dr. Pocinki in Rockville (check out his lectures on YouTube) has closed his practice, and the few specialists I've found don't take Medicare. I mainly need an official diagnosis for various reasons—including what my options are at 76, having gone for so many years without addressing the EDS. Any leads on doctors would be most appreciated.

Have you looked into Dr. Alissa Zingman, MD, MPH/Prism Spine and Joint. I believe she is located in Silver Springs. Specialists are very few. Even if she doesn't accept Medicare, perhaps, if you can gather the funds, it would be worth it just to get the diagnosis. Or perhaps you can get on a payment plan. MUSC in Charleston was putting together a clinic several years ago but I don't know the latest status.

A name and resource where you may find help…….
Dr Bluestein, a top EDS specialist has joined with Mayo Clinic to build awareness. You can also find her on a podcast Bendy Bodies interviewing all kinds of physicians trying to help our underserved population. I’ve heard that over 90% of this population is believed to be women. The research, nor services reflect this significant need of support. Thank you Mayo Clinic for an effort. I encourage you to find the Bendy Body Podcast for a broad resource. At 67 I hear you.
I feel massive disappointment about the lack of even awareness regarding CONNECTIVE TISSUE and understanding the foundation or variations throughout the body. Who is benefiting from ignoring this fundamental medical training? I apologize if that sounds insulting but it feels insulting to be so massively ignored when it’s become obvious of this deficit in the medical field. Thank you to Mayo Clinic for an effort to address this issue.

@lynne123 Thank you! I will check her out.
I'm afraid I too feel disappointment in the lack of awareness of connective tissue issues among most of the doctors I've seen (and I have seen a LOT). The disappointment is exacerbated by their unwillingness to learn, or even to consider the possibility. I've tried all sorts of approaches—asking questions, sharing medical journal articles, making lists, creating charts—but more often than not, I meet resistance and find my concerns dismissed. Doctors seem irritated by the number of health problems I have (so am I!), and I have been asked to identify the one(s) that concerns me the most. I find resistance to address these problems as systemic rather than individual, unrelated problems. Even a dysautonomia diagnosis has failed to get doctors, including rheumatologists and neurologists, to look at the whole picture rather than each individual problem. I know most doctors what to help their patients, but as long as they are a part of a system that mandates 15-minute appointments, encourages prescriptions for symptoms over finding causes, and fails to encourage a team approach for treating patients with systemic and/or difficult to diagnose diseases, we are going to be locked out of the type of healthcare that we pay for and deserve.

@mmmerrimac Sorry for typo. Should be "doctors WANT to help" not "what to help."

100% agreement
and would have responded immediately if not for a systemic flare set back from ….. which makes hard to type, still dealing with ……I would like to communicate further. I greatly appreciate your succinct written communication. Unfortunately we share the same experience.

@ngk1 Thank you for the lead. I'm going to call Prism on Monday. Unfortunately, I live solely on my social security, with no other sources of money. As it is, I'm on multiple payment plans for copays for my medical care as is and can't take on any more debt. I do understand why many doctors are going this route, and I don't blame them, but it's sad when potentially life-saving help is available only to those who can afford. Our health system is broken and in desperate need of an overhaul.

@mmmerrimac I certainly understand. I'm on Medicare too and Part D won't cover an osteoporosis medication that I like since it's not in the formulary, and the one it does cover is almost $500 per month. I realize there is a MOOP for prescription coverage but still.....I think there is a physician in the Denver area as well (can't recall her name) but see what PRISM says. If you explain your situation you never know. And reach out to MUSC in Charleston to find out the latest on its EDS clinic. There is a lab at MUSC made up of researchers who have EDS and they are looking for the hypermobility EDS gene. I don't know the latest. Our youngest son has EDS. I've wondered if I have had a variant of EDS because when I was younger my mother took me to a number of rheumatologists who couldn't figure out what was wrong with me in regards to my lower back and joint pain. Best of luck to you.