By Rosie on Wednesday, December 11, 2002 - 10:20 am:

Hi everyone

I saw a rheumatologist a few weeks ago who diagnosed me with "large joint laxity" but wrote in the letter to the GP that "She does not fulfil the Beighton score for generalised hypermobility syndrome". He did not check if my little fingers or elbows went back, only if I could touch the floor with palms of hands, if my knees bowed, and thumbs touching forearms. (I can't quite touch thumbs to forearms and I'm awful at touching my toes, my leg muscles are so tight)

Of the tests I can bend my little fingers back at 90 degrees, my knees are bowed/go backwards and my elbows also hyperextend although not to a great extent. These are on both sides of the body. The rheumy said my knees went back and the physio said my elbows hyperextended, and as for my fingers well that's easy to test on yourself. The rheumy said I was also hypermobile in joints not tested by Beighton e.g. ankles, shoulders, knees.

Before my appointment I had checked if anyone in my family had psoriasis as it was thought I might have psoriatic arthritis due to my pitted nails. However I had been told by an osteopath I was not hypermobile so did not ask family about that. So the rheumy said I had "no family history of note".

Having thought about it and asked now though.... I come from a circus background and my family used to be circus performers on one side. On the same side (Dad's) my grandad had very bad joint pains similar to mine as an adolescent which were written off as "growing pains", and his mum can still touch the floor with her hands flat at the age of 90-odd (if that's not hypermobile I don't know what is). Two of my cousins from the same side of the family have been circus artistes requiring a lot of flexibility and one of them was born with congenital hip dysplasia and has lots of problems with her hip/s. No one else in my family that I know of has had a diagnosis of hypermobility or HMS.

I have pain in almost every joint and many of them "pop out"/sublux from time to time. My joints snap crackle and pop all the time.

I am also quite short-sighted and have very flat feet. My mum is always commenting that I am always bruised and I never know where my bruises come from. I get them in unlikely places like the insides of my thighs. I am very clumsy and always fall over, drop things, walk into walls, hurt myself etc. the physio said I had poor proprioception.

Almost everyone I have spoken to says "This sounds like HMS to me" but the rheumy explicitely ruled it out. He specialises in connective tissue disorders so I presume he must know more about HMS than me.??

The thing is that I don't really mind what name is put to why I hurt except that e.g. physio doesn't seem to take me as seriously as I think she would if I had been diagnosed as HMS. Also just to _know_.

There is no indication that my hypermobility is caused by another condition like Marfan's.

What should I do? My physio who I have only just started seeing is not very sympathetic and I'm a bit scared of her. I don't think I'll be seeing the rheumy again to ask him. I don't know whether my GP would just say I was wasting his time to go about that.I have heard about the special HMS clinics but would I be able to go to one seeing as the consultant said I don't have HMS? also would I have to go back to the consultant for a referral? how long are the waiting lists for them? can you see Dr Grahame privately? It says on specialistinfo.com that he has a private practic, does anyone know if you need to have a consultant referral to see him privately or if a GP referral will do?

ok sorry this is such a long message with so many questions but I would like to hear from anyone with advice or suggestions particularly anyone who has had similar experiences! Post back here or email me at crana@ntlworld.com

THANK YOU

Rosie

By Rosie on Wednesday, December 11, 2002 - 10:22 am:

oops - I didn't mean knees weren't tested by Beighton! I meant hips!

Rosie

By bree on Wednesday, December 11, 2002 - 08:16 pm:

It's fairly useless for the rheumatologist to rule out hypermobility and then not offer any other suggestions as to what's causing the problem, isn't it. My current rheumatologist says I do have 'generalised hypermobility', even though my situation is similar to yours in that some of my joints are very mobile while others are completely stuck. For example, I'm really good at the 'toe-touching' so I sometimes get not only my palms but nearly my elbows to the floor, but if the doc's ever bothered to check they'd see that I can no longer bend back the other way at all. I've got the flat feet, poor proprioception, etc. too. Also, although my current rheumatologist explains this stuff to me, the first rhuematologist I saw never mentioned that my range of motion was a sign of HMS/EDS, never mentioned that my reaction at most of the trigger points was a sign of Fibromyalgia, etc etc. Truth be told, I found the first rhuem to be pretty mean and scary and he didn't take me seriously at all. It's really quite scary to think that 'luck of the draw' as to which doctor you go to first can effect diagnosis. I used to be really scared about asking the GP for referals and stuff, and I still am sometimes, because I don't want to put her offside even more. But I've sort of come to the conclusion that there is no other choice, because its impossible to just live with these sorts of symptoms. It really sounds like it is worth asking for a referral to one of these HMS clinics you mention - there's a chance the doc may say no, but there's also a chance the doc may say yes, and at least then you'd be able to get a second opinion.