THC good that you've finally got a dx for ds so a treatment plan can be actioned, but so sorry it was what it was, iyswim. 
Hope you are ok. ((hug))
Aunt, well done ds1 ... and ds2.
I'm having an odd time of it. I have today been dxd with complex regional pain syndrome (CRPS - used to be called Reflex Sympathetic Dystrophy or RSD). Came on here to ask if anyone has heard of it in relation to EDS, as it seems to tie in and there's some stuff online about the two being comorbid if you google.
Then I read up the thread a bit and found the stuff about blood pooling in the feet and being unable to return and was gobsmacked as that's part of what's been happening to me.
Basically, CRPS is a type of autonomic dysfunction, where the sympathetic nerves in an extremity go a bit crazy following a minor injury (in my case an ankle sprain and little toe fracture). Initially the body fails to switch off the emergency signals telling the limb to restrict blood flow (in case of excessive blood loss) and this results in the affected area becoming pale and cold (typical shock symptoms). The emergency signals then get stuck in a loop between brain and limb and you get random swelling, nerve and blood flow issues so the limb will either swell and go red/purple and burning hot with excruciating burning pain or go bluey/white with blackness (toes in my case) and icy cold. In addition to this you have constant pain which is extremely out of proportion to the initial injury. There is a picture on my profile of my foot just starting to go red and swell and that was almost 9 weeks after my sprain.
In my case my foot swells and goes purple with black toes as soon as I stop having it raised on a couple of cushions. I was told that the blood is pooling into the foot but unable to return.
I have been to A&E, had xrays done, then back to GP - insisted on more xrays, back to radiology and then back to GP and no-one knew what was wrong - although the second GP made it all much worse with an agonising examination that had me in tears of pain for 48 hours despite high strength co-codamol and naproxen. She referred me to NHS physio, but said it would be weeks, if not a couple of months before I'd be seen and I am now just under 10 weeks of being on crutches whilst in constant really bad pain.
So, decided in desperation to contact a local podiatrist and physio team that run a foot and ankle clinic to see what someone who knows about feet might make of it all. They deal with sports and trauma injuries, as well as diabetic neuropathy etc. Physio came round to assess me at home today and she was amazing. Knew what was wrong straight away and was also able to connect up my neuro problems and hypermobility to the problem straight away. She picked up straight away that I have extremely low tone in my feet and hypermobile joints throughout the foot and ankle. She was also the first person I've seen in almost ten weeks to do more than just poke my foot in a couple of places and actually do a proper examination of function and pain etc.
She works for the NHS as well as various private clinics and said there is no way this would have been picked up in time via the NHS route. You have to catch it within the first three months or the prognosis is not good. She also has the nous to connect up my different health issues and see a pattern suggestive of a whole, system issue, rather than just - brain lesions = brain problem, hypermobile feet = hypermobile feet and CRPS = overactive sympathetic nervous system/autonomic dysfunction.
Of course the frustrating thing is that I will never get the NHS to join the dots, make the right connections and finally agree that there is something fundamentally wrong with my overall health or that the overriding common factor is the probability of my hypermobility actually being EDS. Aargh!
I am worried about ds2 though. He is already having far more problems than I did at his age and I'm concerned at what this means for him long term, especially when I consider the state of my own health.
I am now thinking that if the brain lesions are down to EDS (not that I can get anyone to give me a straight answer on that) and I have autonomic dysfunction (def sympathetic nerves but also had suspicions of POTs for a long time as well) and a problem with the venous aspects of my lower body, what else could be affected that I don't know about and is this enough of a concern for me to go to the GP and push hard for further assessment/dx.
To be honest I don't feel up to the fight at the moment and if it was just me I wouldn't bother, but if there are likely to be more serious health issues for ds2 I can't just let it lie.
Sorry, that all ended up as a much longer train of thought ramble than I intended when I started typing, but I am going to post it anyway as it's helping me to gather my thoughts.