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JHS - what to expect from the NHS?

3 replies

mineofuselessinformation · 06/09/2021 21:54

I know I'm hyper-mobile, but have never been formally diagnosed as JHS.
I read an article last night which finally connected many dots for me.
I'm 99% certain I have JHS. I could reel off symptoms until tomorrow.
What do I do? Besides getting a formal diagnosis, can I access any other help from the NHS?
One of my thumb joints is becoming unusable, one of my knees feels like it's collapsing and I know there is no cartilage left behind the kneecap. (That's beside all of the other issues - I've arthritis in multiple joints and am in constant pain.)
Is anyone able to get physiotherapy via the NHS at the moment? (I was offered the choice of having a steroid injection or an MRI on my knee in December - I chose the MRI, from the physios.)
Has anyone had a successful PIP application?
Sorry to ask lots of questions. The penny has finally dropped for me and I'm feeling quite down about it.
I recognise that going part time at work might help, but don't think I can afford it without some financial help.

OP posts:
mineofuselessinformation · 07/09/2021 18:26

anyone?

OP posts:
FleasInMyKnees · 07/09/2021 18:51

There is a hypermobility support website which may offer some information. A steroid injection and MRI are completely different things an MRI is not a treatment. Can you ask for an ot and physio assessment to see how this affects your day to day life. What does the g.p suggest.

mineofuselessinformation · 07/09/2021 19:16

Thank you for the reply, @FleasInMyKnees.
I understand the difference, but I literally had to make a choice! (Obviously I chose to find out what the problem was, but unfortunately it's biting me on the bum now as it's flaring up again.) I'm just about to contact the GP to ask about referring me for help (not holding my breath there), as I've realised I can't carry on working the way I am - I'm back at work now and have been in agony the last two days.

OP posts:
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