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The big hospital appointment
Aug. 9th, 2007 04:19 pmToday 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.
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.
