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Date of last update: 10/20/2017.

Forum Name: Arrhythmias

Question: Thanks John Kenyon

 tiredmom82 - Thu Nov 15, 2007 2:09 am

25 year old female

Well i just wanted to say thanks for listening to me the past couple of years have been awful and i always felt worse going to the doctors because i felt that i wasnt listened to. It wonderful to have someone listen to you and not think that its all in your head. To have some one truely listen to you is amazing and i thank you for that, so much!

It was starting back in may that i found this site and you started to respond to me, you mentioned that i may have a connective tissue disorder due to the positive ana test that my doctors wrote off as nothing. I had and have many issues with my blood pressure and tachycardia, you listened to that and responded to my questions that the doctors i see wouldnt do, having had you to talk to made things easier for me.

I recently noticed pain in my shoulders all night long that just wouldnt let up so i tried my luck and went to the doctors. I noticed 2 hours before my appointment that my shoulders were coming out of socket it seemed like. So i showed it to the doctor who was amaized that my shoulders where sublaxing with out injury or pain. He told me that i was oddly hyperextended every where and that he wanted me to see orthopedics. Well that made me think back to what you said about connective tissue so i googled tachycardia and connective tissue and Elher-danlos came up and i was scared to find out that i had every problem listed for the Genetic syndrome well i thought POTS Postural othostasis tachcardia syndrome i have that already i know i do, that is thats whats the problem with my arrythmia and blood pressure.
SO when i met with Orthopedics that was yesterday he told me that its very possible that i have Ehlers-danlos syndrome and that i suffer from what seems to be POTS. He told me that almost every joint i have including my tmj is either hyperextended or sublaxing and that i have snapping hips and there all signs of ehlers danlos. ITs really Scary but i now have a referal to rhumatology and they are going to run the tests for ehlers-danlos and related connective tissue disorders. Im so happy that at least now i know what all of me is shall i say is going to hell from.
SO talking to you and google really helped me to take an active role in my health care and i thank you so much.
ITs just really odd because i didnt know my dad and my sisters all seem to have the same problems as me as well as the POTS, so atleast me getting the tests will also aide them in there diagnosis, so we all have you to thank.
 Debbie Miller, RN - Sat Jan 19, 2008 11:18 am

User avatar We are so glad you were able to find answers to your questions. Thanks for the update.
 John Kenyon, CNA - Sat Jan 19, 2008 4:38 pm

User avatar Well hi there! It's been a while, owing to a series of unfortunate events in my life, along with work, politics and a lot of other, very random things. But here I am at last, and am happy to at least know you're on the track of something that would explain your symptoms and, even better, could have been a lot worse than it appears it is. I certainly don't mean to minimize the seriousness nor the long-term aggravation of Ehlers-Danlos Type 3, which is what it sounds like the doctor suspects and which would best fit your description of POTS and loose joints. While this type can be painful and occasonally disabling, it is far less dangerous than Type 4 (vascular). Apparently, also, E-D Type 3, if that's truly what it is, runs in your family. You should all have plenty of support from each other!

A decent prognosis is associated with E-D Type 3, although chronic orthopedic problems are usual. Please do keep us updated on what you learn! From personal experience I can say that it is better to know what's going on and to have a plan to manage it than to continue to suffer and remain in the dark.

My best to you! Thanks for thinking of us, and please do stay in touch.

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