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Adam ([personal profile] me_and) wrote2015-08-19 09:38 am

First JHS/EDS appointment

Spoke to my GP about joint hypermobility stuff. She seemed happy I knew what I was talking about, checked out my knees, elbows, back, and whether I could touch the floor, and I went over the list of joints I get pain in ("that's a lot of joints!").

  • I don't have obvious external symptoms of scoliosis, even if it shows up on my CAT scans.

  • I have "some of the symptoms" of joint hypermobility and/or EDS.

  • UCLH hypermobility clinic is tertiary care; to get a referral there I'd need to get one from secondary care, and she's not going to refer me to secondary until stuff she can suggest isn't working.


  • I'm going to look at pilates and swimming, as they're both exercises that I can do that should help my strength without hurting my joints any more.

  • Although she's said she doesn't want to refer me to secondary care just yet, she's going to have a chat with her colleagues to see if they have had luck providing referrals at this relatively early stage.

  • She is going to get me a podiatry referral for orthotics, after my physio suggested that.

  • If I get to the point where I need painkillers regularly, or they're not helping the pain, or I've been exercising regularly for 6–12 months and things aren't improving, I should go back and get that referral.

Incidentally, I am very much in favour of (i) GPs who aren't intimidated by me having done research on my condition (*cough* Dr Appleton), (ii) who aren't dismissive of what I want to talk about (Dr Keating), and (iii) who explicitly list and agree actions coming out of the appointment.

kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)

[personal profile] kaberett 2015-08-19 09:45 am (UTC)(link)
batdina: (catgut - lanning)

[personal profile] batdina 2015-08-19 06:19 pm (UTC)(link)
nicely done! (also? best of luck to you, in addition to the hard work.)
azurelunatic: A glittery black pin badge with a blue holographic star in the middle. (Default)

[personal profile] azurelunatic 2015-08-20 05:42 am (UTC)(link)
You have definitely joined the correct open source project. There are Quite A Few bendyfolks about.
silveradept: A kodama with a trombone. The trombone is playing music, even though it is held in a rest position (Default)

[personal profile] silveradept 2015-08-20 02:27 pm (UTC)(link)
Hooray for plans. And doctors that don't commit cardinal sins with their patients.
alatefeline: Painting of a cat asleep on a book. (Default)

[personal profile] alatefeline 2016-06-14 01:55 am (UTC)(link)
That is indeed a fairly good experience of medical care despite the gatekeeping effect, I'd say.

I once made a dermatologist drop his jaw with my itemized list of products tried, effectiveness for the condition in question (acne), and side effects. He rolled with it, though, which means I think of him as one of the good doctors. My old ob-gyn was the opposite; scare stories intended to reinforce her worldview all over the place, dismissal of my research, shame-inducing focus on invoking supposed relationship and community norms. Feh.

Explicit agreements basically always beat implicit agreements or implicit disagreements, in my book, because you can point to "oh, there, that is the thing that did not happen as planned" and fix it instead of just being vaguely disgruntled and blameful.