lillybits Posted May 9, 2012 Report Share Posted May 9, 2012 I had a wonderful apointment with dr. chalimski(sp?) in milwaukee but got some additional diagnosises. One of them is veds. which was crushing to me since thats what killed my dad. Is anyones else on here dealing with this also? He told me it is the cause of my pots. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted May 9, 2012 Report Share Posted May 9, 2012 oh lilybits I am so sorry to hear about that hang in there....... wondering if I could ask how does the dr know its what is causing your POTS? and what symptoms did he base it on? big hugs!Bren Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 9, 2012 Report Share Posted May 9, 2012 Hi lillybits,Sorry to hear about the dx. I saw a rheumy 2 months ago who said yes she thinks I have EDS but she has referred me to a geneticist to find out more and determine what kind. I talked to my cardiologist yesterday and she said that if we find out it is VEDS that we will have to monitor my aorta closely. I am not sure what that involves. Quote Link to comment Share on other sites More sharing options...
lillybits Posted May 9, 2012 Author Report Share Posted May 9, 2012 katybug that means full body mri and mra's and cts to moniter all the aryeries and veins and heart for anurisim development after the initial round of scans and blood work they then check on you yearly. for repeat scans.If you have any unusual pain or one of your eyes swell you need to go to the er!!!!.bren he is basing it on the fact that all my colligen/connective tissues are deteriorating and overly flexible and arent tight enough to make my blood pressure and volume rise appropraitly. i cant spell to save my life today! Quote Link to comment Share on other sites More sharing options...
corina Posted May 10, 2012 Report Share Posted May 10, 2012 I'm so sorry about your diagnosis Kim, sending warm thoughts. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.