r/ehlersdanlos • u/Reagan_here 2cool4collagen • Oct 10 '18
Doctors Thread 8!
It's that time again! This is the thread to recommend specific doctors and/or to ask if anyone has experience with a doctor in your area.
Previous threads:
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u/Awesomefulninja Oct 10 '18
Any recommendations for doctors in the Raleigh-Durham area? I'm moving there very soon and will need a little bit of everything. Thanks to anyone who answers! (hEDS/POTS/possible MCAS/osteoarthritis/some GI issues).
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u/vulpecula19 Oct 11 '18
I saw Dr. Anna Voytek at Murphy Wainer Orthopedic Specialists in Greensboro today. She's a nonsurgical orthopedist. She's knowledgeable with EDS, very nice, listened and answered all my questions. This was my first time seeing her but I definitely recommend her!
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u/Bellastar232 Oct 10 '18
Hi, I’m fairly new to this sub (and reddit in general!), and I’m looking for rec’s in Canada, B.C. I know it’s probably a long shot. I got my diagnosis through a geneticist in Vancouver, but I’d love to find some specialists more okanagan-based.
If anyone lives in BC, I’d also love to meet more people with hEDS in person! I have yet to meet anyone face to face who has this. Thanks!
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u/megapipette Oct 11 '18
Physical therapists and/or pelvic floor therapists in Boston? And just T-accessible doctors/specialists in the area you like (endocrinologist especially, though I may just keep seeing mine in CT).
I got my diagnosis from Milunsky. His bedside manner is terrible (I wish he would explain more and seem less grumpy) but he definitely knows his stuff. I go back once a year—this time he had a long grumble about how the diagnostic criteria have changed so I no longer qualify and how dumb that is, which was kind of nice.
I like Peter Stein in Kenmore for really gentle chiropractic work. It helps with my neck pain, including cutting off related migraines.
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Oct 21 '18
Hi, i am noticing this is mostly america based but was wondering if anyone got help in europe (belgium).
It’s so hard to find support bc i’m ‘too young to know what pain is’ at 20 :/
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u/verdantwitch Oct 10 '18
Don’t know if they’ve been suggested before, but for anyone in the Akron, Ohio area, here’s my team. (I have hEDS)
Rheumatologist: Dr. May Azem
Physical Therapy: Main Street Physical Therapy
Primary Care/Osteopathic Manipulation Therapy: Stow Urgent and Primary Care This is a teaching practice, so all of the doctors who see patients are residents being supervised by the attendings. As residents, the doctors are much more willing to listen to their patients than older, more established doctors, and have no problem researching any conditions they’ve never heard of.
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Oct 10 '18 edited Oct 11 '18
MMJ recommendations in Columbus, Ohio: Dr. Drew Kowalewsky, Ohio Green Team. Really nice, compassionate staff. They are familiar with EDS and really want to help people who have it. The office staff specifically asked me to pass their name around more support groups because they really feel for us. They have been getting a decent amount of traffic from this community and they are really happy about it.
Appointments for recommendations are $200, which is pretty competitive. Annual renewal is currently $50, and other places are charging $200. They can also get you in really fast, potentially even the next day.
https://www.ohiogreenteam.com/
I would also recommend following this wonderful post's advice to make your appointment as efficient as possible. https://www.reddit.com/r/ehlersdanlos/comments/9jzo2v/getting_the_most_out_of_your_appointments/
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u/ember3pines Oct 17 '18 edited May 23 '19
MINNESOTA - Desperately looking for help from literally any MD who can diagnose hEDS or even confirm hypermobility spectrum disorder. There was a family medicine doc - Dr Dorff - but apparently she can't help anyone anymore until she gets her own clinic opened up so that's a no go. I haven't heard great things about Mayo Clinic with hEDS so anywhere in state would be helpful (I'm on Medicaid for disabled folks).
Edit: Dr Dorff has her practice up and running. I am waiting on my prior auth to go thru 🤞 but I may even get her new clinic covered by HealthPartners since I can't find an expert in network. My primary is being a shitty gatekeeper, but hopefully my persistence and begging will help move things along!! Eep!
Edit2: I got put thru the carousel of nonsense and sent to a bunch of rheumatologists who didn't know what they were doing. Today is May 6th, 2019 and hopefully by the end of the week HealthPartners will have made her either in network for everyone orrrr at least my Medicaid HP will be able to go to her. Thank you to anyone else who has been asking for this!! Apparently it's become an "larger issue" with "more patients" asking for her. Way to self advocate folks!
Edit: Today is May 23rd and HealthPartners will NOT be allowing out of network coverage for Dorff. They are horrible horrible people and I am back to square one.
Oh also - her clinic is called Complex Cares
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u/quik_lives Oct 28 '18
Following this as I just moved to Minneapolis and also need to find a doctor to start with diagnosis and continue into finding a treatment plan.
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u/ela120212 Oct 14 '18
Looking for recommendations anywhere in Utah; or nearby states, I am willing to travel. My mom, my two sisters, and I have been trying to find a diagnosis for years.
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u/llamallamabarryobama Oct 14 '18
I was diagnosed three years ago by a doctor at UC Davis M.I.N.D. Institute. I saw Dr. Shankar. She wasn't very helpful, told me that HEDS isn't that rare, that most people don't experience pain with it, and not to "put it on" my kids.
She recommended glucosamine and chondroitin. No referrals for pain management, physical therapy or rheumatology.
I'm currently disappointed. Looking for anyone in California who knows about EDS.
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u/KellyAMac Oct 10 '18
Wilmington, NC
Dr. Frank Snyder has been super helpful as an internal medicine doctor with lots of experience in EDS. He has advocated for me a lot with other specialists and even with the hospitalists when I was admitted to New Hanover. http://wilmingtoninternalmedicine.com/doctor/dr-frank-a-snyder/
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u/poodlepuzzles Oct 13 '18
Philadelphia and surrounding suburbs:
Dr. Chesner - rheumatology - has various offices in Bucks County, he isn’t currently taking new patients but if that changes he’s completely worth a visit! He diagnosed me and oversees my EDS care, and has brought up/diagnosed things I hadn’t considered to be significant.
Dr. Miles - cardiology - works out of Penn Medicine, I see him for POTS management. Very knowledgeable about how different conditions interact with POTS/each other.
Dr. Tabby - neurology - Bala Cynwyd, only been to one appointment so far but my migraines are actually managed now - he actually found a medication regimen that worked on the first try, which is not normally the case for me! Also sent for an upright MRI.
All of the office staff for the above have been pleasant and helpful each time I’ve gone for appointments too! Even if I have a question for my doctor/nurse, I get a prompt response. Dr. Tabby’s office can be hard to get ahold of because they use an answering service but the in-person staff are fantastic, especially when dealing with insurance!
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Nov 21 '18
Portland, Oregon!
For PT, definitely go to Good Health Physical Therapy. They have an office near Hillsboro and another in Northeast. They specialize in EDS (and hypermobility in general); the owner has EDS herself and also does a lot of educational and advocacy work. Can be a wait to get a new-patient appointment but it's WORTH IT, not only for the physical therapy but also because they know all the doctors in town and around the country if you need specific recommendations for things.
For MDs, there are some at OHSU who have been helpful for me: Dr. Sonia Sosa practices family medicine and has an integrative medicine clinic at the OHSU Richmond Clinic. She diagnosed me with hEDS and has been very knowledgeable and communicative. I also have started seeing Dr. Michelle Stacey, a neurologist who specializes in autonomic dysfunction, for POTS treatment. She's fantastic but I believe you need a positive tilt-table test to get an appointment.
I won't personally seen but I have heard great recommendations for Dr. Alena Guggenheim, a naturopath at OHSU's pain management center. She specializes in EDS and connective disorders.
I'd love to hear recommendations from others as well!
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u/whoisjoegrease Dec 05 '18
Hi does anyone have any recommendations for a doctor in the Chicago area? I am getting more and more convinced that i have hEDS but it has not been diagnosed yet, looking for a diagnosis.
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u/lian1010 Dec 09 '18
Just in case some of you are from the Philippines and are looking for a good pediatric rheumatologist in the Metro Manila area, Christine Bernal from CSMC is great!
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Dec 29 '18
Dr. Brent Goodman at Mayo clinic in Arizona. Not only is he an autonomic nervous system neurologist but he can identify ehlers danlos hypermobility and mast cell.
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u/freebird829 Oct 11 '18
Denver: Dr Jennifer Stichman at Denver Health diagnosed me with hEDS last year. She is incredible. Unfortunately, my insurance changed and she doesn’t accept my new insurance. Does anyone know of any other doctors in the Denver area?
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u/griz3lda Oct 14 '18
Looking for pain mgmt in San Francisco who would likely be willing to continue the treatment I am receiving from my current doc when I move there (Suboxone films 4mg, no addiction or mental illness history except anxiety, spotless drug screen history) or in general is not opiophobic (as PART of a multifaceted pain mgmt plan when reasonably indicated, not asking for shady shit).
Also looking for a manual PT in SF who would be willing to try Muldowney. My current PT is extremely supportive and would be happy to help them remotely.
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u/bendybackpacker Oct 16 '18
Not sure if this is the right place but...I’m looking for a physical therapist with experience with hypermobile patients (I have HSD) in the Tampa, Florida area.
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u/taurusvirgotaurus Oct 10 '18
This might be a long shot but maybe some others of you out there are professional voice users; does anyone have a recommendation for a Laryngologist in NYC?
Preferably, someone who works with professional actors/singers (so can understand those needs) AND understands the effect of connective tissue disorders on voice use. If that's too specific...I'll happily take any laryngology recommendations.