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I sure hope it doesn't speed up!! lol

I went to the cardiologist on Friday. My old cardiologist retired and I was wanting to make a switch anyway, so it worked out. I had seen this doctor in 2019 so I was not "brand new" to him and he has experience with Ehlers Danlos Syndrome. It was just to re-establish myself as a patient this...

Hi everyone, It's been a while since I have posted on here. My initial posts were of shock when I was initially diagnosed with a slightly enlarged aortic root along with my Ehlers Danlos. (Just hypermobility primarily) I'm extremely high-functioning compared to some I've met with Ehlers Danlos...

Yes it's been the same since the increase in 2018. The increase in 2018 was likely caused by a BP spike I had off and on that year (which we think was due to thyroid issues)...but my BP was not well controlled all year and that was one of the reasons the beta blocker was added (in addition to...

Hi there! I just noticed your post and I would agree with your thoughts in the last post. I go to KU Cardiology and while I've been on a beta blocker, they said I could stop it as I was "stable". Like you, I was right at 3.9-4.0 but I was in my early 30's when it was detected. I'm 38 now...

True.. It could be things that went unnoticed. I guess I just wish I had a crystal ball.. :P I'm expecting to hear back from the doctor this week to go over the results. I'm not sure if I'll have any limitations other than heavy weight lifting of course, but this whole experience has...

Hi there. I remember we chatted on my prior post as well. :) I am going to be 39 in a month...so currently 38. I guess the whole situation presents a perfect combination of all of my biggest fears mixed into a bottle of one. Before any of this was diagnosed, I developed a fear of...

Hi everyone. I've been a member on this forum for years and my first post was after I was diagnosed with an aortic root aneurysm along with the diagnosis of Ehlers Danlos Syndrome (hypermobility and the aneurysm are the only 'major' symptoms presently). I've had several years worth of...

You definitely have to be your own advocate when it comes to health care...and the cause of my aneurysm (connective tissue disorder, Ehlers Danlos) is sort of rare... the doctor could pronounce it..he knew some of the basic symptoms of it and even diagnosed me with it but obviously didn't know...

Oh my... Hi Dan. You sound like me. My new year's goal for 2016 was to start Crossfit. I too, have had to become my own advocate and would have never even learned of my aortic root dilation/size/aneurysm had I not bugged my doctor about it to the point he insisted I see a psychiatrist. I...

Carolinemc - I'm from KC also!

Interesting never heard of pump head syndrome

I hope they discover more about this or find out how to better avoid this issue..

Hi everyone, Quite some time ago, a topic caught my interest and I've read up on it from time to time. That topic is those who claim (or their loved ones) Alzheimer's was triggered due to surgery involving general anesthetics. I have to warn in advance, I am a bit of a worry wort but this...

DDwheeler: That's a shame you have not yet found a cardiologist you can trust. It does help to have a good primary though. It's too bad they can't recommend one. Are you by chance a Braves fan? (I am).

Thank you for the responses. Yes, thankfully he is no longer my doctor (that recommended the psychiatrist). I feel I have a pretty good group of doctors right now. I have been going to KU Cardiology for a couple of years though I'll be getting the CT scan at St Luke's, which I don't really...

Thank you. Actually, even though it was proven that I had a reason to be concerned, he held to his word... I had to see a psychiatrist afterwards. I will say he eventually left where I was going, and then I did thereafter...so I have a new, better doctor now (whew).

It's that time of the year again (summer). I was diagnosed with Ehlers Danlos in 2012 but it didn't really matter that much until the summer of 2015. I had been the person to bring the issues up to my doctor, which was basically only hypermobility, which led to a diagnosis with two different...

I remember reading about this, but it's not available in the US. It sounds great, but I'm wondering why the United States hasn't jumped on board yet?

Agree with the above. Keep an eye on it but it doesn't look like something to worry about right now!