Author Topic: How to get a diagnosis (Read 1761 times)

veganbee · « **on:** August 15, 2012, 03:22:50 PM »

Hi all

I have my fair share of mechanical problems with my knee, and over the years have seen dozens of PTs, OSs and GPs who have all commented that I'm 'probably hypermobile too'. The OS I saw last year (who I'm no longer under the care of) performed various tests but nothing came of this as he was somewhat 'distracted' by my bone and ligament issues and possible surgery.

I've just moved to a new area and have an appointment with my new GP in a few weeks' time - how do I raise this with her? I'm keen to find out if I actually do have a recognised hypermobility condition as I know too well that leaving things unattended to can be your worst enemy! Also, even though I'm not planning kids anytime in the next few years, it is a definitely consideration for me in the next 5-10 years and I'm aware hypermobile pregnant ladies have a tough time! Also concerned about passing anything onto my children (when I was born myself I dislocated my hip due to laxness)

Any help, ideas, input and advice much welcomed!

Thank you.

franny · « **Reply #1 on:** August 15, 2012, 06:01:22 PM »

Hi vegan eye,

It is such a tricky task getting a proper diagnosis i waited til i was 27. The only reason I got one was because my daughter was referred to physio at about 18 months as she was still totally non weight bearing. We were both sent to a geneticist and diagnosed with EDS type III or joint hypermobility syndrome.

I take it you are with a GP in the UK? I was advised that another route is to go to your GP and explain your situation and request to see a rheumatologist, I think they can diagnose you and then it will be on your medical notes.

In terms of pregnancy - I had a few problems with my pelvis & hips and had physio. Although I did not have an official diagnosis I discussed my hypermobility with my midwife (I was very lucky as she was great) and it was put on my notes anyway. I score a nine out of nine on the beignton test so im definatly hypermobile. Have you done this test as it is a good initial checker.
There is some great info on this site; http://www.hypermobility.org/

Good luck

F
x

veganbee · « **Reply #2 on:** August 16, 2012, 09:24:39 AM »

Hi franny

Yep I'm in the UK. I am seeing my GP on the 5th September anyway so will raise it then.

I have eight out of nine on the beignton test which was done by my last OS, and also lots of pain, subluxations etc as is mentioned on the site you posted (very useful thank you!)

I have private health insurance through work so might investigate to see if they will cover an appointment with a rheumatologist, as my knee op is coming up on 27 Sept and I want to see someone before then.

Thanks for your input Franny - hope your daughter is getting on okay!

Bee

Silkncardcrafts · « **Reply #3 on:** August 29, 2012, 01:45:19 PM »

Ask to be referred to a Geneticist for a diagnosis.

Whereabouts in the UK are you ?

Author Topic: How to get a diagnosis (Read 1761 times)

veganbee

How to get a diagnosis

franny

Re: How to get a diagnosis

veganbee

Re: How to get a diagnosis

Silkncardcrafts

Re: How to get a diagnosis