Diagnosing JHS (HMS), EDS and Marfans

Appointments generally. Getting the correct diagnosis, finding the right doctor or dealing with the issues arising from being diagnosed with a hypermobility related disorder.

Diagnosing JHS (HMS), EDS and Marfans

Postby Guest » Fri Sep 30, 2005 5:50 pm

MOD EDIT- removed IV to have all EDS types included- MODDING OVER


Diagnosing HDCTs

This is the DIAGNOSTIC CRITERIA FOR JOINT
HYPERMOBILITY SYNDROME (JHS)

Diagnostic Criteria for Vascular Ehlers-Danlos Syndrome
(EDS- IV)

Diagnostic Criteria for Marfan Syndrome
Guest
 

Postby Guest » Sun Oct 23, 2005 2:22 am

i have a ? now about my diagnosis, but not a doctors opotion.
What is the difference between JHS and HMS because i pass the test for JHS but my doc said i have HMS?

please respond you can pm me if it is easier thanks :D
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Postby nonyanomemory » Sun Oct 23, 2005 2:31 am

Hi engodo2525

Its difficult really as you are in the US and the terms used over there can be different anyway. It is possible to be hypermobile but without pain or anything so when your doc says you have hms, He/she may mean that by having hms it means you have the syndrome not just the double jointed part. If I have intrepreted the question wrong or answered incorrectly let me know. But best to ask your doctor or your mum/dad if you are not sure and discuss what the doctor said exactly so that it is all put into context for you. Hope this helps nonya
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Postby Guest » Sun Oct 23, 2005 2:35 am

i do indeed have the pain just so you no and i should have tried to word my ? better. what i meant "is HMS a syndrom it self like JHS or is HMS the big name for JHS?
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Postby nonyanomemory » Sun Oct 23, 2005 3:08 am

Hi engodo, I think you put the question well and it is a complicated area and a very good question. To be sure that I am going to give you the right information I am going to speak to another moderator before I answer you properly, I do know that they are busy this weekend, so when I have had the opportunity to speak with them and bearing in mind the time difference between the US and the UK I will get back to you if thats OK. nonya.
46yr female EDS H/mobility Type c/over vascular Dxd Prf G
V Prem club ft short stature early onset varicose veins thin skin
Striae o'rthritis/porosis PHN POTS spasms n'pathic pn IBS bladder stuff bulging discs & more!

d/tr severe EDS 20 yr
nonyanomemory
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Posts: 1065
Joined: Tue Aug 17, 2004 9:55 am
Location: uk

Postby Guest » Sun Oct 23, 2005 1:32 pm

thank you very much :D :D :D :D
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Postby nickb » Wed Oct 26, 2005 4:05 pm

engodo2525 wrote:i have a ? now about my diagnosis, but not a doctors opotion.
What is the difference between JHS and HMS because i pass the test for JHS but my doc said i have HMS?

please respond you can pm me if it is easier thanks :D


Hi

My personal understanding of the two terms would lead me to think they mean the same

JHS- joint hypermobility syndrome
HMS- hypermobility syndrome

Both mention syndrome so they both mean you aren't just hypermobile but you also have problems caused by the hypermobility.

In case you ever see it-there is another label for us that is still unfortunately sometimes used

BJHS- Benign hypermobility syndrome

same thing again-with an unfortunate name-benign in this case just means not life threatening-but it implies its something minor so most good doctors, like Prof Grahame do not tend to use the term

Hope I've made some sense!
Nick B

My Blog
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Purley a personal view point here

Postby Guest » Sat Oct 29, 2005 4:16 am

Hi there,

I've been struggling a lot with this question myself this last week as my daughter has just been officially diagnosed with familial HMS this past week - I self diagnosed her about a year ago with H-EDS. I've done lots of reading and this is my interpretation of the results.

Hypermobility - flexible joints - no other problems.

Hypermobility Syndrome (HMS) - Flexible, lax joints, more prone to injuries and dislocations and sublaxtions than hypermobile people and also associated with more pain and ill effects of flexibility and laxicity.
Also called BJHS (Benign Joint Hypermobilty Syndrome) JHS (Joint Hypermobility Syndrome)

Now for the tricky part;

H-EDS Hypermobiltiy Ehlers Danlos Syndrome - lot's of conflicting view points on this both amongst sufferers, scienticst and doctors. Some believe there is alot more skin involvement in EDS than HMS both elacticity wise and extent of bruising. Some believe there is a lot more internal issues with EDS than HMS such as with the heart and other major ogan systems ad some belivee that they are all one in the same thing just to avarying degree of severity. Personally I believe the latter theory myself and I have spoken to alot of people who have been diagnosed with HMS who also have skin and internal issues - talk about complicated. :wall:

Just to add a little more confusion into the mix our Geneticist diagnosed HMS and then went on to say we don't have a disorder????? (This one I'm stumped on as Annie in particular is hypermobile in every joint in her body which therefore indicates a collegen defect - but not a disorder? I thought the disorder was a collegen defect :think: )

Now as I said this is only my interpretation of what I have read (and I've read lots!) but my take on it is this - it doesn't matter what you call it. A name is a name is a name. If you were called something else you'd still be you wouldn't you? :wink: The point I'm trying to make is don't get stuck on the name - concentrate on the managment and keeping yourself fit, well and happy. You'll find it much more rewarding and beneficial to your overall health and happiness. Hey... if it helps you could make up your own name like say floppyjointitis :lol: Have some fun with it and try to stay happy.

Jules :bye:
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Postby Guest » Sat Oct 29, 2005 10:32 am

Hi Jules, you give a very clear summary of the different theories, and I'm sure this would help many confused peeps overhere. And about HMS not being a disorder: well I'm not sure about that one, but I think my geneticist says just about that. She diagnosed me with familial hypermobility, and said to me that "some people call that a syndrome". Then in her letter is says that "there is no clear indication of a syndromatic cause for the hypermobility, such as Ehlers-Danlos syndrome". During the exam however, she told me she couldn't diagnose it, but not exclude it either, and that some people believe this "form" to be a mild form of HEDS. So there's the controverse! It is however confusing to us patients, especially as many doctors do not tend to take HMS seriously, whereas EDS is seen as something more severe and more genuinly disabling. Now I speak for myself if I say that I do not have much skin involvement or internal issues, (but some of both!) but am very limited in my everyday life because of this condition. So when people say to me that I do not have EDS and therefore my complaints "shouldn't" be this serious, I tend to react with anger at so much ignorance. Also, whereas we would say that hypermobility without the "syndrome" part indicates just hypermobility and no severe problems, some doctors insist to call it hypermobility instead of HMS, thus confusing others. My current rheumy for example was the first to really take me seriously, and whilst I know he calls it HMS in other patients, he calls it hypermobility in me, even though he tells me how serious this is in my case.. Bugs me, to be honest. Now I still don't know what he thinks of it.

Ok, I don't know if this helps, but I copied a bit from the HMS book:

HYPERMOBILITY OR HYPERMOBILITY SYNDROME?
The acknowledgement within medical circles that joint hypermobility can be responsible for he production of distressing and disabling symptoms has been slow in coming. There are still many rheumatologist who remain sceptical about this (Grahame 2001). The credit for being the first to suggest such a link goes to Kirk, Ansell and Bywaters, who in 1967 coined the term 'hypermobility syndrome' (HMS) to describe the occurrence of musculoskeletal symptoms in 'otherwise healthy individuals', in other words, in the absence of other defined rheumatic diseases. (Kirk e al. 1967). Other authors have subsequently suggested minor modifications to the name, namely 'joint hypermobility syndrome' (JHS) and 'benign joint hypermobility syndrome' (BJHS), but all three terms are used synonymously. The adjective 'benign' was introduced in the 1990s when it became clear that life-threatening complications did not form part of the clinical picture (Mishra et al. 1996). It subsequently also became clear that many patients suffer from a miserable existence arising from pain and other symptoms, so that the epithet 'benign' has become objectionable to many patients, and in deference to them it should be dropped. For this reason the term 'joint hypermobility syndrome' (JHS) will be use exclusively through-out this book. As will be discussed below, JHS and the Ehlers-Danlos syndrome- hypermobility type, formerly referred to as Ehlers-Danlos type 3 (EDS III) - are considered by many authorities to be one and the same.
[Prof R. Grahame, Hypermobility Syndrome- recognition and management for physiotherapists]
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Postby Guest » Sun Oct 30, 2005 3:52 am

You know the more I read and speak to people the more i get the impression that JHS, Hypermobilty and BJHS are all a bit of a cop out diagnosis that are given when geneticists, doctors and specialists don't want to commit themselves to a more concrete diagnosis. They assume that because there are no physical symptoms the "condition" is not as serious and debilitating as one which has physical characterisitics. I thiink they all ought to practice a little more bedside manner and LISTEN to what their patients are telling them - but I digress. Again - it doesn't matter what you call it, the point is living with the effects of being "not quite right" and effective management for a happy life (if you're lucky) and a tollerable life (if you're not so lucky :hug:).

Just my take on things.
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Postby nonyanomemory » Wed Nov 09, 2005 11:17 am

An interesting link to HEDS/HMS information.

nonya
46yr female EDS H/mobility Type c/over vascular Dxd Prf G
V Prem club ft short stature early onset varicose veins thin skin
Striae o'rthritis/porosis PHN POTS spasms n'pathic pn IBS bladder stuff bulging discs & more!

d/tr severe EDS 20 yr
nonyanomemory
Carpal tunnel
 
Posts: 1065
Joined: Tue Aug 17, 2004 9:55 am
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Postby Guest » Thu Nov 10, 2005 2:10 am

Thank you evryone for the help and i like what Eskimo-7
Now as I said this is only my interpretation of what I have read (and I've read lots!) but my take on it is this - it doesn't matter what you call it. A name is a name is a name. If you were called something else you'd still be you wouldn't you? The point I'm trying to make is don't get stuck on the name - concentrate on the managment and keeping yourself fit, well and happy. You'll find it much more rewarding and beneficial to your overall health and happiness. Hey... if it helps you could make up your own name like say floppyjointitis Have some fun with it and try to stay happy.


thanks evryone for the help :D :) :D :) :D :)
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Postby LianneS » Wed Nov 30, 2005 10:37 am

I was diagnosed with HMS years ago by a different dr to the one I have now...this one then said he didnt think I had it (as he didnt really understand much about HMS other than they can be realy bendy like those in the circus) Anyway I pushed it with him last night (though didnt have to push hard) for him to admit I do have it but he kept referring to it as Ehlers Danlos Syndrome ... Now I thought that was more to do with insides too and the brilliane descriptions Eskimo - 7 gave seem to support that....
Is my dr just not well informed or could there be truth in me having it?!! I still think I just have mild HMS but I am suffering with problems inside that are remaining undiagnosed and theyre basically calling it IBS even though I dont think it is...

Lianne
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Postby Guest » Thu Dec 01, 2005 5:56 pm

I think it will be down to his lack of education on HMS and knowing more about EDS
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Postby nonyanomemory » Thu Dec 01, 2005 10:44 pm

Lianne, have you thought about referral to a specialist in HMS? nonya
46yr female EDS H/mobility Type c/over vascular Dxd Prf G
V Prem club ft short stature early onset varicose veins thin skin
Striae o'rthritis/porosis PHN POTS spasms n'pathic pn IBS bladder stuff bulging discs & more!

d/tr severe EDS 20 yr
nonyanomemory
Carpal tunnel
 
Posts: 1065
Joined: Tue Aug 17, 2004 9:55 am
Location: uk

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