I’ve copied and pasted this from a post I did earlier on diagnosing EDS, I dont know if it will help:-
“You don’t mention the Brighton Scale (or Brighton Criteria, as it’s also known), which I think is the most recent measure, as it includes autonomic involvement. I don’t have stretchy skin (although it does break down easy) and have hardly any hypermobility (only knees and ankles), yet I was diagnosed EDS III, in 2010 using the Brighton Scale. I had already been assessed a couple of years previous, using the old Beighton scale, which looks at hypermobility only and was told I didn’t have it.
I think the Brighton Scale says if you have 1 of the major criteria, one of which can be arthralgia (pain in the joints) for >3 months PLUS 2 minor criteria, so if you also have ‘autonomic’ involvement and yet didn’t score too high on the Beighton scale, you may still be diagnosed positive using this new Brighton Scale, see if your consultant is aware of it. They are saying that Joint Hypermobilty Syndrome is indistinguishable from Ehlers-Danlos Syndrome, so it could be the same thing?
Copy and paste this link into your browser, to see an article on the Department of Works and Pensions website which includes details of The Brighton Scale:
As for your ‘brain slowing’ what on earth is that ?! Did they tell you if they could speed it up ? It may be all part of the big picture.
Regards
Barbara
(UK)