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Ehlers Danlos Syndrome - Who is the best doctor to see?
Bones, Joints & Muscles | Last Active: May 8 8:59am | Replies (53)Comment receiving replies
I am 61 and went to see an ortho for and ankle sprain and she said I have "benign joint hypermobility" because of the high degree of inversion range of motion I have in my ankles. She said I am hypermobile in my wrists and knees too. Nobody has ever commented on it before. I asked her if it could be something more than benign joint hypermobility like EDS and she just said "well that is a clinical diagnosis". I have bad migraines and asked my neuro about it . She said I have the appearance of many she has seen with EDS which she described as "lanky" but said that there really is no treatment so it does not matter if I officially have it or not.
I have osteoarthritis in both my wrists at the thumb and both knees and my neck is a mess and probably contributes to the horrible migraine. I think it would be good to know if some of this is EDS related, like maybe to keep our eyes out for other related issues?! I am going to ask my physiatrist when I see him what he thinks. I have a rheum appt in a couple months and will ask her, too. I do not know if there is someone local to me who really knows much about this or not.
My question is, is it important that I get diagnosed or ruled out for EDS or not? Is just realizing I have some hypermobility enough? And if not, why not? What needs to be done for this diagnosis? I want to go armed to my next appointments with knowledge to use in my discussions.
Thank you!
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I think we should start a special section for "Doctors Say the Darnedest Things." I have been on a 15+ year search for a diagnosis (es) for what's wrong with me. It's only recently that I found out that EDS and POTS run in my family. I've had hyper mobility (undiagnosed) since I was a kid and just looked at it as a "party trick" to amuse my friends. I had no idea that it was a medical syndrome that causes problems over time.
I'm 75 now and have been diagnosed with dysautonomia. I'm scheduled for a tilt table test to confirm a POTS diagnosis and am searching for a doctor who has expertise in POTS/EDS. There are some near me (DC/MD), but it's hard to get an appointment.
I had a neurologist ask me why it was so important to me to get a diagnosis since they can just treat the symptoms! It was such a strange question from a medical professional. #1. Treatments differ depending on what the disease/disorder/syndrome is. I'm on a ton of medications right now, some of which exacerbate the problems. EDS/POTS/Dysautonomia all affect the whole body, so just treating one part of it (e.g., migraine, arrhythmia, neuropathy) isn't as helpful as finding out what is causing the symptoms. Also, if these diseases go undiagnosed, we won't make much progress in understanding them. I like to think that the next generations won't have to go through what so many of us have in finding answers.
Here's a link to what the Ehlers-Danlos Society has to say about Hypermobility Spectrum Disorder vs. EDS. I hope it's helpful.
https://www.ehlers-danlos.com/what-is-hsd/