How long did it take to obtain your d... - Ehlers-Danlos Sup...
How long did it take to obtain your diagnosis of EDS from when you first consulted your doctor regarding your symptoms?
My symptoms of hypermobility and stretchy skin that cuts and bruises easily were evident from birth. My mother knew what to look for as she also has EDS. However, it was not until my parents were accused of child abuse further to many trips to A&E with me and my brother, that my mother sought a proper diagnosis. At the time I was about 7 or 8 years old.
I have always had very stretchy joints and thought that this was just 'normal' as my parents and siblings were very athletic and flexible.
Had a nasty experience with an epidural anaesthetic during surgery (didn't work) which always seemed a bit random, I didn't realise that it could be related to any syndrome.
It is exactly 4 years ago that I had such a problem with my knees and ankles that I was unable to work more than a short distance due to pain and poor balance. I couldn't believe things had worsened so much without me noticing but my joints are completely out of line. It took from May 2009 until October 2012 to get a diagnosis (gave in and paid for the private appointment) but had already seen several oesteo consultants about straightening my joints.
Now, on advice of the Hypomobility consultant, have to accept that this will probably make things worse.
All the diagnosis has done is confirm there is nothing that can be done and bumped up my life insurance.
Well most of my symptoms got diagnosed one by one from childhood (flatfeet, fatigue, easy bruising, high pain threshold/resistance to anaesthetic, torn ligaments/bendy joints, swollen joints) until one very smart GP connected the dots when I was mid 20s!!!! Again it's now mostly focused on managing the pain/swelling & preventing injury.
Similar experience to me except i was 30 when i got diagnosed.
had symptoms from a baby,collected loads of diagnoses,aged 30 had x ray told had arthritis in spine and neck,aged 37 had xray on hip,dislocated told by orphapedic doc would need a hip replacement ,aged 42 saw a rheumatologist who said I was hypermobile and had fibro. in 2009 I asked my Gp for referall to a specialist,went as in patient and was dx aged 50 with EDS.
Diagnosed with rheumatism at 15, crps at 25, arthritis at 40, probably all the same thing suggested at 42- dr unsure but probably eds.
I was always falling and getting seriously hurt with broke arm, dislocated shoulder, MANY bruises in the weirdest of places and seriously bad gashes and gapping wounds. My parents were questioned about abusing me and they said that I was really clumsy. I was finally taken to a dermatologist and he said that I had EDS. I was 13 at the time. I am now 47 and have lived a life of misery when it comes to dealing with Drs. Telling them I have EDS and they not really know other than what they read about in school. I have to have techs do certain things when they take my blood. I have to have certain Drs/specialist when I have to be sutured. Physical Therapy is a joke sometimes because I can't do most of what they want me to do due to over-extending joints and other crazy things. LOL Life with EDS is eventful. 
Age 23 to age 32 so nearly 10 years. Was originally diagnosed with fibromyalgia accepted a referral to the fibro clinic. I explained my difficulties to 2 different physios the 1st tested me using the outdated criterion the 2nd used the newer criterion and diagnosed my straight away.
Symptoms began in 1987, diagnosis in 2010.
I'm hoping not too long! In the long run my symptoms started when I was 9, now I'm 19. Just starting to go through the process with Rheumatology and Genetics! So I hope to get a full diagnosis soon.
I have had issues since birth but I finally got my diagnosis of hEDS last year at age 25! That was only by chance that I found the Hypermobility Unit in London. This would have otherwise (most likely) been left.
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