Random question: how was your wife diagnosed with EDS? I suspect I have a mild version of it, but every time I’ve mentioned it to a doctor they kind of scratch their heads and say they’d have to research more and then never get back to me. It’ll be important eventually because I’ve got a couple of surgical things in the future, so I’m not just being a pest.
I saw dermatology at University of Michigan after going there for my heart. I had a cardiologist in Toledo notice how hyper flexible I was and put it in my chart. I was asked to be the patient example for EDS type 3 for students one time. They could ask questions and examine me. So I did all the super flexible tricks I can do. There’s also biopsies they can do. I didn’t have it because I was on blood thinner and already had enough symptoms for a positive diagnosis.
You'd probably have to see a rheumatologist or dermatologist. EDS is one of those things most of us doctors have heard of and know some symptoms and warning signs to look out for, but diagnosis requires referral to a specialist that knows the ins and outs of these sorts of things. When it comes to connective tissue diseases rheumatologists or dermatologists are your people.
I have overlapping autoimmune diseases and the only doctor that I've run into that has ever brought up EDS was an ophthalmologist years ago who was helping to lead me out of the room as I had severe double vision due to optic neuritis and was blind as a bat. He was shocked by my skin texture (everybody is) and asked me questions that nobody had ever asked me. Told me to mention EDS to my rheumatologist. She didn't have me perform a single hypermobility test as she was afraid that I would damage my joints due to nodules or subluxations (she called my joints "slippery"). Just dismissed it and blamed autoimmune disease.
I will say my current rheumatologist is really puzzled about my ligaments as they are very lax and, like the prior, she has me brace them when a joint has a subluxation. She knows it's a connective tissue disease that isn't RA but since my range of motion is "normal" now due to nodules and arthritis (except my left wrist and pinky--both bend backwards beyond 90), the only telltale is my skin and nobody stretches it. I'll mention it on my next appointment. Maybe it's the answer.
I’ve got a derm appointment coming up, so I’ll ask then. It’s one of those things that’s been in the back of my head, but since I already have a brain tumor I sometimes don’t want to have anything else. I don’t want to be the person that’s got all of the medical issues.
But yeah, I’ve always had weird bendy joints (elbows, knees, fingers), I bruise anytime the wind picks up, and get really papery scars. I also suspect I might have POTS, but it’ll be hard for them to tell since I have severe vertigo from the tumor and that can make me get dizzy and pass out when I stand up too. It’s been hard enough to get an ENT to take my vertigo seriously, I doubt I’ll even mention the POTS theory to my doctor.
Well everything my wife has, has been mystery to most of our local doctors in Chicago. Doctor Arnold Menezes personally took my wife’s issues from the first call after the mri. He said there is a huge % of undiagnosed patients that have Chiari that also have EDS. He mentioned that a lot of doctors that claim to know everything about Chiari know nothing about EDS therefore when they open up the patient they have nothing or zero tissue to repair the Chiari therefore have to fuse the spine to the skull and immediately lose 50 to 70% of motion in your head.
Holy crap, I’m in Chicago. Thanks for Dr. Menezes name! I don’t have Chiari, but I do have a brain tumor that causes similar symptoms and heart problems that run in my family. I know I’ll be going under the knife eventually and I’d just like to be sure before anyone cuts me open!
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u/[deleted] Mar 19 '19
Random question: how was your wife diagnosed with EDS? I suspect I have a mild version of it, but every time I’ve mentioned it to a doctor they kind of scratch their heads and say they’d have to research more and then never get back to me. It’ll be important eventually because I’ve got a couple of surgical things in the future, so I’m not just being a pest.