By shazinoz on Tuesday, December 03, 2002 - 11:45 pm:

I am told I have HMS or similar. I have the hypermobility of small and large joints, Pain, Subluxations and dislocations but I also have skin that bruises easy, scars easy, slightly widened scars (my brothers scars are like 2-3 cm (1 Inch)wide), mitral valve regurgitation and increased peak flow across aorta, IBS and other tummy problems, I get this sheering/blister stuff when things rub on my skin (but my skin doesn't just break open), I have bad stretch marks (not as bad as my sister who has purple ones from neck to knees), I tear and stretch ligaments frequently, I suffer from Migraines, allergies, asthma, eczema, rashes, RSD, HLA B27+, JRA, HAve had problems when I was a kid with my hip bones losing bone and then regrowing it, tinnitis, weird optic nerves, bad balance and proprioception and more.
The 1st geneticits I saw (I have seen 2) said that I don't have EDS because I don't have the very stretchy skin of EDS (it is a tiny bit more stretchy but not like super elastic) or the doughy skin or the fragile skin of EDS. The 2nd geneticist I saw said I am not even Hypermobile (YEAH SURE !!!) I score 5/9 on the Beighton Scale and 2 Major and 2/3 minor's as well (not counting the same two).
So my question is when does HMS become EDS ????? and do I have HMS or EDS ??????

What can I do to get a diagnosis?? if I can't even get 2 geneticists to agree that I am even Hypermobile.

My skin stretches a bit between wrist and elbow I can pull the skin about 2cm or so and on my upper arm about 3cm (is this Stretchy?? or Normal??).

My skin is sort of Soft (I think) but then how do I know if it is EDS soft or not? it is just normal to me.

HELP PLEASE ANYONE !!!!!

By shazinoz on Wednesday, December 04, 2002 - 10:37 pm:

Bye the way I live in Canberra, Australia.

By simone louise on Monday, December 30, 2002 - 10:49 am:

i also have been asking myself the same question

my rheumatologist said that i havent got eds, she said that i do have hms but she doesnt take on the fact about my dislocations, she always comes up with an excuse, i was also recently told that i have severe coccydynia and that i may need spinal injections ( that was my gp who said that) and she the rheummy wont even acknowledge the fact that my coccyx dislocates she never listens to anything and tries to say that because i have had a stressful couple of years that that is the reason and whenever i have a bad attack she says well have you had much stress recently she forced me to see a psychitrist they think its all in my head
she completely annoys me

anyone any suggestions?

By Lin on Thursday, January 09, 2003 - 10:01 pm:

Get a new rheumatologist. Seriously, I have seen a lot of doctors that I never went back to because of the way they spoke to me. It takes time, but when you hit that perfect doctor that listens, and researches for you, and tries to help you get rid of pain that all the idiots from the past dont matter.
Lin

By Jeanette B on Monday, March 24, 2003 - 04:55 am:

Is there any difference at all between BHMS and EDS III?
I got the diagnosis hypermobile in November 2002, but my rheumatologist didn't specify more.
The problem is that I live in sweden and the swedish MDs do not know that much about these syndromes.

I.e. I went to 5 different MDs before I got my diagnosis. 4 of them didn't believe me or didn't have the ability to help me further...

My pain has decreased enormously since I started to visit a physiotheraptist, but I still wonder about my condition and if it will affect my life in other unpleasant ways than "just" pain...

Please help me to find more information about BHMS and EDS III!

/Jeanette

By sharon on Monday, March 24, 2003 - 10:27 am:

Jeanette some say BHMS and HEDS (old EDS 3) are the same thing and others say they are not, I guess until they can find the relevant genes that mark these disorders we will never know. I was originally diagnosed with HMS but as my "other" symptoms increased HEDS was diagnosed (My other symptoms include IBS,tinnitis, ear and hearing problems, Eye problems, trivial heart valve problems, Lung problems, teet and gum problems and also things like chronic subluxations and dislocation, major injury from small/insignificant factors, tearing of ligament svery easily, easy bruising and scarring, allergies and asthma, constipation and diahreah sp?, some king of megacolon problems, mestruation troubles, and spasms and MORE).
My GP is the one who came to the conculsion it is HEDS as my symptoms are TOO much for just HMS, or so he says when my geneticists could agree if I was even hypermobile.
There is no real treatment for either HME or HEDS so it doesn't REALLY make a difference in your treatment per se but may infact help with getting some help if it is diagnosed as HEDS rather than HMS (which doctors seem to dismiss as just the upper limit of "normal") Ovvioulsy they have NEVER had to live with it or they would NEVER say it was NORMAL (HEDS or HMS).
Hope this helps a little
Good luck
Sharon

By Ian on Monday, March 24, 2003 - 11:31 am:

Jeanetteb -

Joints are created whenever two adjacent bones meet. They have fibrous bands of connective tissue called ligaments that stabilize the joint. Connective tissues also form the tendons that join the bones to the muscles. Ligaments and tendons usually restrict the movement of the joint, but in some people, these normally restrictive tissues can be quite flexible and allow a wider range of motion than is usual. Such a person is hyper mobile and may be called “double jointed” by friends. There are many people with hyper mobile joints and they go through life like this without any problems and without pain. Practice can increase a joint's natural flexibility just the way stretching can increase your muscles' flexibility so a person who regularly demonstrates party tricks to “freak out” friends will become more and more flexible and more and more amazing with these party tricks.

But if the hyper mobile joints cause problems such as frequent pain or joint dislocation the person may have Hyper Mobility Syndrome (HMS). Living with HMS can be a major problem in terms of pain and mobility problems. However, if the hyper mobile person has more than joint problems they may have Ehlers Danlos Syndrome (EDS). Various forms of EDS have hyper mobility as a characteristic but will also have skin stretch or other major problems that can even be life threatening.

To a person who has hyper mobile joints and great pain, or even unintentional dislocations, the name given to their problem (EDS or HMS) will be of little interest to them as they seek a cure to their joint problems. As well, the medical folk tend to be finite in their definitions but a person with HMS or EDS can well have overlapping symptoms so they must explore the facts of what symptoms exist and accept these as a gene problem.

Regards, Ian (mercedes_nz@yahoo.com)

By nipple25uk on Wednesday, July 16, 2003 - 11:58 am:

hello ive recently been told i have hms.i am suffering with dizzy spells and was wondering if that has anything to do with it.my doctor says there is nothing wrong but i know different.im having good days and bad days.

By Hamfist on Wednesday, July 16, 2003 - 12:23 pm:

Hi, nipple25uk

If the tendons and ligaments surrounding joints allow a wider range of motion than is usual a person is hyper mobile and may be called “double jointed” by friends. There are many people with hyper mobile joints and they go through life like this without any problems. But if the hyper mobile joints cause problems such as frequent pain or joint dislocation the person may have Hyper Mobility Syndrome (HMS) and someone has told you that you have this. I hope they were well qualified to make that judgement!

Hyper mobiles can be extremely "loose" in their joints and this can include having vertebrae that are hyper mobile. If this sounds like you then it is likely that an upper vertebra may have moved and is pinching a nerve causing your problem. It is unfortunate that doctors often do not help HMS patients.

Regards, Ian (mercedes_nz@yahoo.com)