Rodeo Mom Posted August 9, 2017 Report Share Posted August 9, 2017 Hi, I'm having a relapse of POTS. I've been dealing with it since 2008(?) I'm trying to remain positive because I am grateful that I at least no longer have the chronic pain, fatigue, and migraines to go with it, but I'm so tired of the orthostatic blood pressure taking me away from my life. I've seen some posts mentioning EDS. What is EDS? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 9, 2017 Report Share Posted August 9, 2017 Welcome to the forum. Here are the links from our resources page that may be helpful: Ehlers-Danlos Syndrome (Joint Hypermobility Syndrome) Ehlers Danlos Syndrome. University of Washington, Seattle:http://www.orthop.washington.edu/uw/ehlersdanlos/tabID__3376/ItemID__32/PageID__1/Articles/Default.aspx Ehlers-Danlos National Foundation:http://www.ednf.org/ Ehlers-Danlos syndrome, classical type:http://ghr.nlm.nih.gov/condition=ehlersdanlossyndromeclassicaltype Ehlers-Danlos syndrome, hypermobility type:http://ghr.nlm.nih.gov/condition=ehlersdanlossyndromehypermobilitytype Joint hypermobility syndrome: a complex constellation of symptoms:http://www.reumatologia-dr-bravo.cl/para%20medicos/HIPERLAXITUD/www_jointandbone_org_RODGRAH.htm Connective tissue disorders with spontaneous spinal cerebrospinal fluid leaks and intracranial hypotension: a prospective study:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14683542&dopt=Abstract Association Between Joint Hypermobility Syndrome and Panic Disorder:http://ajp.psychiatryonline.org/cgi/content/full/155/11/1578 Is joint hypermobility related to anxiety in a nonclinical population also?http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15345789 Neurological manifestations of Ehlers-Danlos syndrome:http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2005;volume=53;issue=3;spage=339;epage=341;aulast=Mathew Your eyes and Ehlers-Danlos Syndrome:http://www.totaleyecare.com/ocular-complication-ehlers-danlos-syndrome-1.html?_ga=1.14621751.1418931888.1390611040 Quote Link to comment Share on other sites More sharing options...
Debbie Rose Posted August 10, 2017 Report Share Posted August 10, 2017 So what doctor diagnosis EDS?? Debbie Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 10, 2017 Report Share Posted August 10, 2017 Hi Debbie--a geneticist would diagnose. There are specialists in various places in the US. https://www.ehlers-danlos.com/eds-diagnostics/ Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted August 11, 2017 Report Share Posted August 11, 2017 My daughters see an autonomic specialist at Stanford, he's a neurologist, and he readily diagnosed them. They saw a geneticist once and was saying "maybe, they might have Ehlers Danlos" but would never commit. The neurologist right away could tell. No hesitation. Quote Link to comment Share on other sites More sharing options...
Debbie Rose Posted August 12, 2017 Report Share Posted August 12, 2017 Thanks for the information I don't think I will be pursueing it right now, too expensive,sad to say Quote Link to comment Share on other sites More sharing options...
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