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Author Topic: Hypermobile but not Hypermobility Syndrome?  (Read 4442 times)

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Offline vlm020

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Hypermobile but not Hypermobility Syndrome?
« on: December 08, 2010, 08:43:52 AM »
Hi all,

Some of youy may have seen my posts on other walls but since I'm joining the 'hypermobile club' I thought I would post here too.

I've seen a number of specialists over the years mostly in relation to knee and hip pain and have always been told I was 'a bit bendy'!  Well, I tore my quad muscle 18 months ago and again in April this year and things haven't been right since.  I've had physio, seen biomechanical specialists, podiatrists and now a rheumatoligist.  My knees turn in quite markedly and there is some debate as to whether this is something to do with my hips or tibial torsion and I'm now trying to track down an 8 year old set of CT scans (I can't remember what the conclusion was apart from 'we can't help you').  I had my Beighton's score measured for the first time last month and score 8.

At the moment I'm trying orthotics and practicing standing on one leg!

My rheumatologist thinks I'm hypermobile but don't have Hypermobility Syndrome as I have none of the skin symptoms, although I'm being sent for an ECG.  Has anyone else had a similar diagnosis?  Have you had any benefit from someone confirming that yes you are 'double-jointed'? 

Thanks!

Offline franny

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Re: Hypermobile but not Hypermobility Syndrome?
« Reply #1 on: December 10, 2010, 03:57:11 PM »
Hi Vim,
    I have found that there is a lot of confusion in regards to Health Care professionals and giving a diagnosis of hyper mobility syndrome. I have been told for a long time that I am hyper mobile but only recently have I found out about hyper mobility syndrome. I am also struggling to get a diagnosis for my daughter as some people say that it is only a symptom (in which case what is the cause?). If you go onto the hyper mobility syndrome association's web page there is an interesting bit about diagnosis. According to them it appears that you can have what is called benign joint hyper mobility syndrome which occurs without the skin and organ conditions normally associated with conditions such as Marfans Syndrome.
You should check out the website, it is quite useful, here is the link - http://www.hypermobility.org/index.php
Hope that's of some help.
F
Bendy Childhood
1999 - Dislocation R Knee-cap
2002- dislocation L knee-cap & arthroscopy
Many subluxations & instability in both knees
2008- gave birth to daughter, PGP, subluxation and instability following birth
2010- dislocation L knee-cap
2011- EDS III diagnosis 
02/07/12- MPFL Reconstruction

Offline vlm020

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Re: Hypermobile but not Hypermobility Syndrome?
« Reply #2 on: December 10, 2010, 07:00:28 PM »
Thanks for your help, I will have a read.  :-)















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