A bit of blog catch-up

Has it really been over a month since I last updated this thing? No, it’s closer to two months, apparently.

The good news is that I’ve finally worked out how to feed this into my Facebook thingy so no more need to cross-post the heck out of everything 🙂

I think that various people got the main news from the big hospital appointment over the last few days, but I’ll summarise for those who weren’t at lunch with me today (yummy thai followed by coffee shop) or getting the feed from my mother:

I saw a lovely man called Professor Graham at UCH in London on Thursday. He is the country’s leading chap on hypermobility disorders so if anyone was going to know what is wrong with me, it’s him. The excellent news is that he actually managed to get a diagnosis for me! Hooray! He even got me a couple of extra diagnoses…

Apparently I have Benign Joint Hypermobility Syndrome.  We were already figuring that I had it, but it was good to hear someone committing to it. He also thinks that I have Developmental Co-ordination Disorder, which is why I am forever bumping into things, tripping on things, falling over thin air and generally being a total clutz. Lastly, he confirmed my suspicions that I have Irritable Bowel.

Better than a diagnosis is a Plan and a whole ton of referrals:

  1.  MRI of my left hip. He can’t work out why nobody thought to do it before (everyone kept telling me that there was no point – shows what orthopaedic surgeons know!) because he thinks that there may be some tissue damage on the rim of my hip that would account for all the pain. Yay!
  2. Physio. Lovely. Strengthen my muscles so that they do what my ligaments don’t and re-train me so that my spacial perception improves i.e. I stop bumping into everything.
  3. Pain management clinic. It won’t be another bunch of pills, but lots of information and advice about how to control the pain so that it no longer controls me and what I do.
  4. Find some form of regular exercise that I will enjoy. To that end, I am looking into aqua aerobics and yoga classes, which would be fun, have an instructor and be the kind of exercise that will strengthen me without risking damage.

Apparently the reason that I’m getting so much pain is partly to do with my nerves being a tiny bit wonky: they amplify pain and won’t turn off, which is also why local anaesthetics don’t work on me.  And here the anaesthesiologist a few years ago thought I was kidding when I said that three doses of lidocain didn’t work! Heh.  It’s also because I’m getting some wear damage from the overly mobile joints. Hopefully all of our plans will arrest any further damage and improve my current situation.

It was all very positive (he didn’t once tell me that I’ve just got to put up with this – hooray!) and I like him a lot. Now I’ve just got to wait for his report to get to my GP and rheumatologist and then the referrals will start coming in. I hope!

The interesting thing for relatives is that this thing is inheritable and comes down from my mother’s side. Prof G doesn’t know why some people can be hypermobile with no problems and others end up with a ton of pain and injuries, but it’s worth getting checked out if you think that you or any of your kids have it. Particularly if you think any of the kids are getting an unusual number of injuries. There is physio out there that can stop them getting to the stage many of us adults have reached!

2 Comments (+add yours?)

  1. Trackback: EDS Alert Newsletter No. 18 « EDA Alert Newsletter
  2. Kerriegf
    Mar 22, 2008 @ 01:29:41

    i am gonna show this to my friend, man


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