Little nephew - not MS

Everyday living
1

Some of you may remember me posting about my little nephew, who is not yet 12, who’s been having mysterious fatigue and pain.

Which did ring some alarm bells with me, because some of it’s very similar to things I started off with, years ago.

Anyway, his first consultant reckoned ankylosing spondylitis. I suppose, if I had to choose, I’d consider that a slightly lesser evil than MS, but still not good.

Anyway, today he saw the rheumy, and has been diagnosed with hypermobility. That’s all the news I’ve got, so far.

Hypermobility by itself isn’t an illness - it’s what used to be called “double-jointed”, and, in many cases, is symptomless.

However, I thought that where it was associated with symptoms such as pain and fatigue, it was diagnosed as hypermobility syndrome. Now obviously, he has symptoms, otherwise he wouldn’t have been at the hospital over it. But I’m not clear whether he’s been diagnosed with the syndrome, and if not, why not.

In general, it seems to have a much better outlook that either MS or AS, and especially in children, as it seems it’s possible to “grow out of it”. So even though I’m not 100% convinced we’re in the clear, I’m greatly reassured, for the time being. I’m still sorry he’s living with invisible pain and fatigue at just 11. I was much older than him, when that first became part of life, and I didn’t think it was fair then! Nobody should be having to put up with it at 11.

Tina

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2

Ah bless him. Lots of big hugs for him and Aunty Tina. Catherine Xx

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Hi Tina, well that sounds like good news and far better than it could have been anyway. That must be a weight of your mind. Cheryl:-)

4

Tina I have a friend and both her children have hyper mobility syndrome, whilst they are both still very young at 16 & 14 (diagnosed at 9 & 12) they still have very active lives all be it at times struggle with both fatigue and times on crutches. So glad it’s not the dreaded MS that’s one disease I wouln’t wish on my worst enemy. Hope he can manage to enjoy a fullfilling life. Sue x

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Thanks All,

With family history being what it is (we had a distant aunty with MS as well), I suppose I’m always going to be a bit paranoid we’re not out of the woods, but hypermobility, if not exactly a “get out of jail free” card does look a bit better than the alternatives so far…

I hope he won’t end up on crutches. He’s already struggling with sports at school. I was cr*p at PE too, but somehow I don’t think it matters as much if a girl isn’t sporty. Boys are expected to be more physical - it goes with the territory. So I already feel for him that he can’t be the typical, roughty-toughty male. Particularly difficult at 11, when they’re all asserting their identities, and he’s not like the others.

I do hope he will grow out of it. Luckily, he’s quite bright, so I don’t think he’s ever going to need perfect fitness to make a living, but it’s still a shame to be struggling, at such an impressionable age.

He was quite tearful about it recently. He’s had a couple of other minor health problems, too - but one of them quite personal, for a little boy, if you get my drift. Nothing life-changing or dangerous, but just not the sort of problem you want, on top of everything else. I feel really sorry for him.

T.

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Very, very young. I am very sorry for his problems and fingers x Rahma xx

7

Thanks Rahma,

It’s his birthday soon, and we’re all clubbing together to get him the new iPod, which he is desperate for, so hopefully something to take his mind off things - for a while, at least.

Tina

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