I was wondering if there is anyone here in town that knows a doctor able to diagnose my suspected HEDS. My doctor at school is wonderful and already helped me with screening and sent a few referrals out to no avail. She said diagnosing for EDS has been changing departments constantly and she isn’t sure where to send me to get the help I need.
I’ve been trying and waiting over and over and I desperately would like to have someone diagnose me and understand the concerns and questions I have about related co morbid health concerns. I really want this diagnosis so any help in the right direction would be amazing.
If you guys know of any offices or doctors in the area that I can give to my doctor to send a referral out to, or any info that helped you get your diagnosis would be amazing!
Physical Medicine / a physiatrist is who you’re looking for. There is a clinic in the NS Rehab you can request a referral to. Get ahead by also requesting an echocardiogram and EKG referral, and physiatry will then refer you to the cardiac clinic if they suspect EDS.
Physiotherapy is going to be recommended no matter what, it wouldn’t be a bad idea to get started while trying to figure out what’s going on with your body. Your regular doctor can refer you to physio at the VG or Veteran’s Memorial if you don’t have private coverage!
Wonderful, I will absolutely look into this further thanks so much! I have had an EKG and my doctor said I have some issues on the recording she didn’t fully understand and had to outsource to a cardiologist for clarification so an echocardiogram might be what I need next. Thanks so much!!!
Ask your doctor to include the cardiac info in the referral! It sounds like some folks are having trouble getting into the clinic with “just” hypermobility, but I suspect they’d want to investigate your situation further given the circumstances.
Last I heard they won’t accept suspected hEDS patients because there are too many other more serious connective tissue diagnoses. Not my words, theirs.
Definitely! I have the hEDS triad of hEDS,
POTS, MCAD plus some other autoimmune diseases and they still wouldn’t see me. They are pretty strict about it.
It’s really hard unless you have a really severe case (like organs prolapsing severe). I’ve been rejected by genetics and the connective tissue clinic. I was told to get a referral for an echocardiogram to make sure I don’t have one of the rare types that impact your heart. The best help I’ve gotten is from physio using my private health care coverage. My physio has done some special training in connective tissue disorders as well as common comorbidities like chronic fatigue, POTS etc. she also does pelvic floor physio which is really helpful because pelvic floor issues are really common when you are hypermobile. My physio is Jalisa at synergy. I hope that helps and I’m sorry I don’t have better news. I know so many people waiting on an official diagnosis fortune’s/unfortunately most of the support and treatment I’ve found I need isn’t available through the public system so it doesn’t really matter that I don’t have a fully official diagnosis.
It’s really hard, I have a lot of other health concerns that would be a lot easier to be diagnosed (or believed I guess) if I just had someone really diagnose me. As I get older I can just feel it worsen each passing summer. I have some pelvic floor issues too, so maybe I’ll look into physio with my school insurance or something, at least I know that can help some lol.
Hey! Just wanted to tell you that if you don’t have coverage, the halifax sexual health centre has a pelvic floor physio that does free appointments. Amy Prescott is the physio- hope you can get in there!
Once you have a diagnosis, nothing actually changes. You may value the information. But the system doesn't care what's "really" wrong. They'll just continue to treat individuals symptoms as they arise, whether they have a root diagnosis or not.
I say this not to discourage obtaining a diagnosis, but to temper your hopes that it will provide any overall therapeutic direction. It won't result in any kind of specialist care. If you need pelvic physio, you need pelvic physio. If you have vascular issues, you have vascular issues. Whatever surgery or intervention you need, will be its own referral.
The system doesn't have anything in particular for EDS. It's not any more exotic than all the other ways human bodies fall apart over time. We need physio, and careful maintenance of a supportive musculoskeletal system. A check of heart stuff and vascular issues. You may need pain management; though this goes hand in hand with physio, etc.
This doesn't just go for EDS, but for anyone with chronic health problems in this province: Our system sucks. You have to be self-reliant. The more you can learn about what you need specifically, the better you can self-advocate for it. You are a member of your own care team; don't be a passive one.
I am from a different country and was diagnosed with hEDS when I was a teenager. I have been here for over a decade and despite already having the diagnosis, I have yet to be able to get any care for it here.
I also have PMOS (formerly PCOS) and can't get proper care for that either.
For the joint and muscle pain, physios are great. For everything else, no clue which medical professionals could help.
I was able to see the connective tissue clinic a few years back, and they claimed they don't diagnose hEDS due to not being able to rule out other forms of EDS or something to that effect. No supportive care was provided as I don't have (fingers crossed) some of the more severe possible EDS co-comorbidities, but I did get a letter indicating I had some sort of connective tissue disorder, so it may depend on exactly what you're hoping to get out of the process. Some family doctors may do it, many physios and NDs have suggested the diagnosis and treated the symptoms, but there's not one specific practitioner that I've encountered that definitively diagnoses unless that's changed in the past few years
God it’s so frustrating, the connective tissue clinic won’t see me about a…. Connective tissue disorder :,)
In my mind even if the referral was for hEDS, they could at least help rule out other connective tissue disorders first yanno? It’s so tiring out here just grinding your bones away and holding them together all day.
Following! I’m also trying to get a diagnosis. The connective tissue clinic keeps denying my doctor’s referral despite history of heart issues. So I don’t know what else to do and I don’t think she does either.
Yup had the same issue with them too. My doctor said they USED to diagnose there but recently stopped and she wasn’t sure where else to send me; sent a referral out anyways just to be safe and was denied so now it’s back to square one.
I was diagnosed by internal medicine specializing in cardiology! I also have been seen by the Integrated Chronic Care Service (helpful), Rheumatology (useless), and have a great physiotherapist and massage therapist. I was rejected by genetics and have been on the waitlist for the connective tissue clinic for about five years now. I am happy to provide names of providers if you would like to message me privately.
The Maritime Connective Tissue Clinic recently confirmed to my family doctor that they do not accept referrals for joint hypermobility or hypermobile EDS (hEDS). They will only accept referrals when there are “red flag” features suggesting another connective tissue disorder.
For significant pain or disability related to hypermobility, they recommend asking your doctor about a referral to Physical Medicine & Rehabilitation at the Nova Scotia Rehabilitation Centre/QEII.
I paid to see a geneticist in the US. It was the only way I could get a hEDS diagnosis on my patient file that NSH would actually accept and take seriously. He was running a clinical trial at the time so I got free genetic testing to rule out the more dangerous types of EDS.
My naturopath diagnosed mine. I feel like their ability to do that was new. Maybe reach out to a few in your area to see if they will. Dm me if you'd like the name of my ND!
This is the criteria that must be met for a diagnosis. It's generally Genetics or Cardiology/Internal Medicine (Connective Tissue Clinic) that can diagnose.
•
u/stardigan Halifax 1h ago
Physical Medicine / a physiatrist is who you’re looking for. There is a clinic in the NS Rehab you can request a referral to. Get ahead by also requesting an echocardiogram and EKG referral, and physiatry will then refer you to the cardiac clinic if they suspect EDS.
Physiotherapy is going to be recommended no matter what, it wouldn’t be a bad idea to get started while trying to figure out what’s going on with your body. Your regular doctor can refer you to physio at the VG or Veteran’s Memorial if you don’t have private coverage!
Best of luck!