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The big hospital appointment

  • Aug. 9th, 2007 at 4:19 PM
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Today was the big hospital appointment at UCH in London with Professor Graham. I got back a couple of hours ago. It felt rather like a wall fell on me in the train, so I'm going to type up the highlights and then go back to watching a movie with Mum.

It was a mixture of unsurprising and new yet relieving things. Professor Graham is a very kind, gentle man who felt very reassuring. He spent over an hour with me, going over my history and checking me out very thoroughly. I officially have Benign Joint Hypermobility Syndrome. He, er, couldn't find a joint that wasn't hypermobile. Heck, my neck is hypermobile! He was quite impressed :-)

This would account for the joint pain I'm getting. He even reckons that the occasional chest pain I get is to do with my ribs being a little wonky. Yay!

He's also diagnosed Developmental Co-ordination Disorder (formerly called dyspraxia) which would be why I'm a total clutz, can't get past a chair or door frame without crashing into it and have never managed to catch a ball in my life. Hey, I have a medical excuse for being a total clutz! It's to do with my spacial perception and is one of the reasons why I get so many silly injuries. Heh.

The stomach problems are IBS, apparently. Dyspraxia and IBS are, apparently, very common in people with BJHS.

It's all quite reassuring, oddly, even though I've come out with more diagnoses than I thought that I would. He doesn't feel that he'll need to see me again (unless I have some massively stupid moment and decide that I need to see him) but he's left it so that I can call the clinic for another appointment if I need it. He's going to recommend that my GP sorts out:

1. Physio with someone trained in dealing with BJHS. We need to strengthen the muscles to support my joints better, because the ligaments aren't up to the job. A physio would also be able to re-train me in how to move and compensate for the dyspraxia.

2. Pain management course so that I can learn ways to deal with the pain better and we're not talking about a bunch of new pills. Yay!

3. MRI of my hip because he thinks there could be some soft tissue damage.

So we have a diagnosis and a plan of action. I don't have any of the more dangerous forms of EDS. My arms, legs and hands are sized out of proportion with my body but my feet are normal - he said that ain't helping me :-) But it's not Marfans, which is a relief. It explains why I can't find shirts and gloves to fit, though! And I'm officially not a careless clutz, there is something wrong with my spacial perception and it feels oddly reassuring to know that after years of having teachers, doctors and even colleagues getting frustrated with my clumsiness. They can even help me with that.

He also diagnosed Mum with hypermobility and dyspraxia. Heh. She was diagnosed with IBS years ago. Apparently, when she was pregnant, her back went totally out of wack and she ended up in bed flat on her back for a couple of weeks at one point. I've been browsing around the HMSA forums and apparently this is not unknown in hypermobile people. Um, I think that Mum would have liked to know this before she had children.

But we know now, and that's the cool bit.

I'm now totally exhausted and just want to spend the day veging, so that is what I shall do.

Comments

( 11 babbles — Babble at me )
[info]gmul wrote:
Aug. 9th, 2007 06:47 pm (UTC)
Sounds like basically a "Yay!" then. It's good to know these things for sure at least.

Graham is a very kind, gentle man who felt very reassuring
Well of *course*! ;-)
[info]selenay936 wrote:
Aug. 10th, 2007 08:45 am (UTC)
It's basically a "Yay!" with a side-order of complete relief :-) I've been doing some reading up on the dyspraxia thing and it explains a whole bunch of things that I've always put down to me being useless, which feels really good. It means that I now have a plan on how to deal with everything better. Not a cure, but I don't expect one. A plan for better management so that I can get my life back is almost as good, though :-)
[info]wimble wrote:
Aug. 9th, 2007 07:03 pm (UTC)
Yay for knowledge!

Boo for being broken. But the knowledge is the new bit, so Yay!
[info]selenay936 wrote:
Aug. 10th, 2007 08:47 am (UTC)
I know why I'm broken now and there are people out there who can help me to deal with it better. We have a Plan. It feels really rather good :-)
[info]sazzle_02 wrote:
Aug. 9th, 2007 10:50 pm (UTC)
Good news all round then (especially re the pain management).

xx
[info]selenay936 wrote:
Aug. 10th, 2007 08:49 am (UTC)
Good news all round :-) I'm not sure how I feel about the psychological aspect of pain management, but I'm reassuring myself that it's not that I'm crazy or even clinically depressed. She/he will be teaching me how to manage it all better and get my life back to normal. Hey, I finally have an action plan!

And the even better thing is that I can pass on everything I learn to Mum because she's in the same boat - we can help each other.
[info]paranoidangel42 wrote:
Aug. 10th, 2007 02:35 pm (UTC)
That's good that you finally saw a doctor who worked out what you had and has a plan to sort it out.

Er, was going to say something else but head injury = no short term memory.
[info]selenay936 wrote:
Aug. 10th, 2007 09:43 pm (UTC)
Yeah, it was good to see someone who could actually tell me what was wrong and wasn't telling me that it's something I've just got to get used to. There's no cure, I know that, but he seems to know how I can start to control it rather than letting it control me. And it's about there being things that I can do to help myself, which nobody has been willing to show me how to do before. So, yayness.

Also...head injury???? Hon, are you OK? Alive? Seriously damaged? Minorly damaged?
[info]paranoidangel42 wrote:
Aug. 11th, 2007 09:01 am (UTC)
Oh, yes, forgot you don't read all your friends list.

I walked into a fence on my way home from work on Monday (in my case my accident proneness is entirely due to me not looking where I'm going). According to the NHS Direct website you can only have concussion if you passed out, which I didn't. But I do have most of the other symptoms. Or did, it seems to be better today (although it probably helps that I haven't done anything today - I went back to work Friday and only lasted till lunchtime).
[info]selenay936 wrote:
Aug. 13th, 2007 07:20 pm (UTC)
How are you feeling today? Recovered?

Yeah, I don't always get all the way through (or even part way on really really busy days) my f-list so I miss important things :-( Sounds like you really clunked yourself badly there {{{hugs}}}
[info]paranoidangel42 wrote:
Aug. 13th, 2007 07:40 pm (UTC)
Yeah, I am better today.
( 11 babbles — Babble at me )

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