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A question about Ehlos Danlers Syndrome

5 replies

dsmama · 03/02/2019 22:42

Hello, I am wondering if anyone can advise me about Ehlos Danlers and what the benefit would be of pursuing a diagnosis?
I have recently been given a 7/9 score on the Beighton scale by an nhs physiotherapist. My most painful symptom of hypermolity has been disfunction of the sacroiliac joint, which started when I was a teenager (30 years ago) and has for the last year been the cause of excruciating sciatica and increasing disability. I often have to walk with a stick, and sometimes can’t walk at all. I am having to take time off work to concentrate on physio and swimming to try to turn it around. I am freelance and can’t manage the travelling and the hours at the moment. But I can’t have too long off, and need to make the most of the time I can afford.
I have other issues which I suspect are related: bad bunions, osteochonditis desiccans (as a teenager), muscle spasms in my shoulders, long-term fatigue, high blood pressure which I think is caused by my airway collapsing in my sleep - I wake up gasping for breath. I also lost the hearing in one ear a year ago.
I have mentioned my thoughts about Ehlos Danlers and sleep apnea to my GP but they haven’t been investigated. To be honest I am at the doctors surgery so often I feel embarrassed to make any more fuss. But on the other hand my health and quality of life have taken a nosedive and I think it is all linked.
So is it worth pushing? Does it make any difference getting a diagnosis when there isn’t any treatment, other than the peace of mind that comes with a better understanding of what is going on?

Sorry for the long post...!

OP posts:
dsmama · 03/02/2019 22:45

Also, I can’t spell!

  • Ehlers Danlos
OP posts:
ninalovesdragons · 03/02/2019 23:17

There's a new toolkit that was released for GPs last year on EDS and it's management. There's a section on when to refer to a specialist -

www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx

Hope it's useful

ninalovesdragons · 03/02/2019 23:19

Certainly if you haven't already, I'd check other joint conditions have been investigated eg antibodies for autoimmune conditions as these should be ruled out; your GP can do this with blood tests

dsmama · 03/02/2019 23:29

Thank you ninalovesdragons, that is really helpful. I did ask her to test for inflammation markers, but when the results came back (normal) I had been tested for ‘calcium group’. That said, I have had an MRI and a CT scan which haven’t revealed any arthritis. I will read through the link you sent. Thanks for your thoughts.

OP posts:
PerkingFaintly · 03/02/2019 23:59

ninalovesdragons thank you, that's incredibly useful.

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