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I wanted to respond to the question about EDS 3 and low BP/elevated HR. Sounds like POTS or NCS, which are forms of dysautonomia. As much as 80% of EDS 3 patients have dysautonomia, with POTS and NCS being the most common presentations.
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Sorry, one more question: does anyone else with EDS 3 have issues with a fast pulse and low blood pressure? my "new normal" has been to have a fast pulse (sometimes its 150) and when the diagnosing doctor saw that in my chart she made an "mmhmmm" noise; as if it tended to go along with EDS. Thanks again!!
my legs are definitely a very slightly different length. I just attributed this to the general 'wonkyness' of my body to my scoliosis (I have type 6 EDS) so I guess if you pelvis or spine is slightly off-kilter, your legs might appear to be different lengths? but at the same time, there is no one type of body, and sometimes people do have these little things about them that just exist because they're human. not sure about the rest of the question though.
Do you or does anyone else know if limb length discrepancy and all the shit that goes with it, is at all associated with EDS? And if the chances of developing Severs disease is increased with EDS? I had it when I was about 7 and it got to a point where some days I actually couldn't walk, thing is I didn't do any sport other than swimming (low impact) so I didn't really have the risk factors other than the leg length issue - which then leads back to my first question...
I have no idea. Anyone know?
I'm the one who just sent the cardiology ask. Didn't realize I wasn't signed in and nobody can message me any advice they may have if they don't know who I am. Oops.
Original ask: I have my first appointment with a cardiologist in a couple weeks and I'm terrified. Do you or any other spoonies have any advice on what to expect? I'm only 18 and "cardiologist" is the last thing I want to hear.
Thoughts anyone? :)
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I have my first appointment with a cardiologist in a couple weeks and I'm terrified. Do you or any other spoonies have any advice on what to expect? I'm only 18 and "cardiologist" is the last thing I want to hear.
Any advice, friends?
For the medical alert bracelet: I recently ordered one because I'm traveling solo and if something happens and I'm given the antibiotic I'm allergic to, I'll die. So I got it specifically for that, but I also put the drugs I'm on, on it as well. I considered putting the EDS, but then I thought that a. they're probs not going to know what that is, and b. for me (type 3) in an emergency situation it isn't going to matter too much.
Makes sense! Thanks!
