Seeking a Diagnosis (Cont...)

[MontgomeryJ]

Hello,

I have recently become aware that I might have EDS after seeing several consultants and connecting the dots. For example, no arthritis blood markers. I also have a comprehensive clinical features of Marfans/EDS but I am playing the normal waiting game to see a geneticist. I do have an appointment with a physio who knows a lot about EDS, but my question is:

Can a physiotherapist who is trained in EDS, give me a 'generalised/semi-official diagnosis' of EDS, which can then be subtyped by a geneticist once the skin tests and other tests are made?

I am just struggling to get through the week with the pains I have and subluxations everywhere, that I need something very close to a diagnosis to get better right now so I can actually be clear to my work, friends, family whats going on and how to manage it.

Any advice is appreciated,

Warm Regards.

[Jay66]

Hi and welcome.

Whilst strictly speaking a geneticist or a rheumatologist is needed to give a diagnosis, you are right that an experienced physio can tell you if you have it. You can certainly go with a working theory.

If you are in pain, this needs dealing with regardless of the cause.

Be careful with your choice of physio though. I saw a physio who was very familiar with people who were hypermobile (dancers) but they did not have hEDS, whereas I, with two left feet, have hEDS. This meant she underestimated the amount of pain it caused, and focused on fixing posture.

[MontgomeryJ in reply to Jay66]

Thank you ever so much for your response, much appreciated. I just need some direction so that I can continue with my life with clarity, peace of mind and a plan of action to manage my numerous issues. I will be sure to find the right Physio who has knowledge of EDS so they can accurately identify my bodily impairments.

Warm Regards.

[MontgomeryJ]

If anyone else has any knowledge of experience of this issue, then please leave a comment, any advice is appreciated.

[BendyClare]

Hi, I was recently diagnosed with Joint Hypermobility Syndrome. I meet all criteria for HEDS, just no family history. While a diagnosis does help with clarity and direction, EDS doesn’t really have a specific treatment. Treatments are more targeted towards the comorbidities associated with the syndrome. With this in mind, you can seek out help now for your specific symptoms. Especially the ones that are causing you the most immediate issues.

Generally a diagnosis from a physio would be an opinion. They may have knowledge that means they can tell you have a group of symptoms pointing towards EDS, but they are not able to give you an official diagnosis. I’m not from the UK, but I imagine it would be the same. It can take sometime to get the diagnosis.

Physios, if experienced with EDS can be a great tool in pain management. And if you are finding it hard to get through the week you should consult with your general practitioner.

Hope this helps you in some way. And I hope you get a diagnosis soon, knowing why we are the way we are is so important.

[cyberbarn]

The RCGP have developed a toolkit so that GPs can diagnosed EDS. It is on their website, but many GPs are choosing to ignore it it seems! Others can use it too, like physios, so take the link with you to your physio and GP and see if one of them will at least do a working diagnoses. Good luck! rcgp.org.uk/clinical-and-re...

[MontgomeryJ]

Thank you to everyone for your helpful advice - I hope to get a diagnosis soon!