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Rodeo Mom    0

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? 

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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

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Debbie Rose    0

So what doctor diagnosis EDS??

Debbie

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DizzyGirls    0

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.

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Debbie Rose    0

Thanks for the information

I don't think I will be pursueing it right now, too expensive,sad to say

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