HMS Variants.

[fawn2388]

Any help, suggestions, guidance, ANYTHING well me helpful.

I'm 20 years old. I have always been 'flexible', wasn't too concerning til recent years (8 plus now). I've had many knee/shoulder surgeries. I went to genetics doctor, got testing Elher Danlos did not come back, niether did Marfans. She just defined me as 'hypermobile' and was told to 'stay in shape' and to a doctor when I got hurt. I'm so fustrated with the pain, dislocations, teeth problems, stomach issues, everything, is there variants out there that are just 'worst' than other and that are considered hypermobilty, any help would be greatly appericated, any direction or even knowing that I'm not alone, I'm fustrated, and have gotten to the point I took a medical leave of absence from school to figure out all my orthopedic problems which are apprently stemming from this. Thnk You.

[Finarda]

What testing did the doc do for Ehlers-Danlos? Did she do the Beighton scale? I know that some of the places I read that you have to be able to do most of the joint positions, but my hands are pretty painful and I can't touch my thumb to my forearm anymore, but I used to be able to - however, the doctor took the fact that I used to be able to do it into account so I ended up with 7/9 but I remember thinking that if he had been really, really strict then he could have said that I didn't pass. He also took into account that a lot of my other joints extend beyond the normal range of motion.

Looking at the criteria yourself, how do you feel you would rate yourself?
http://www.ednf.org/index.php?option=com_content&task=view&id=1352&Itemid=88888970

And here's the diagnostic criteria for HMS:
http://www.reumatologia-dr-bravo.cl/para%20medicos/crit%20y%20diag/DIAGCRITJHS.htm

If she did the skin biopsy then that only looks at a one or two types of EDS.

Fiona

[fawn2388]

I had a Beighton score of 6/9. It was blood testing. Any interpations, my skin is pretty okay, my scars are horrible though.

[Blaadyblah]

HMS affects everyone differently, at different times.

I know some people confined to wheelchairs, some who used to be but no longer are, and yet more who have hardly any problems at all after an initial flare up and physio they're right as rain again. Some have skin involvemet, stomach issues, others don't.

Luck of the draw I think.

[Frankles]

It does seem to have so many different variations, I think that's partly why doctors tend to brush us off to other health workers - they just don't know what to do! Some days I'm fine and have little pain and wobbliness, other days I can barely shower without having a nap afterwards and taking lots of painkillers. I'm not terribly hypermobile as an 8/9 but I'm mostly just outside the normal range of movement on the test rather than a contortionist, I also have no skin issues save a 50/50 chance of ugly scarring. It's really scary when you have no information on what to do or how or what the future will hold, the important and difficult thing is to get yourself some coping mechanisms, reading through the boards here and asking questions is a good starting place.

The advice to 'keep in shape' is good, but not terribly helpful - basically you need to see an experienced physiotherapist who is prepared to do some learning and take a patient-led approach. A physio will generally treat one problem by itself - I've encountered this a lot - but the ideal situation is a physio who will treat-as-seen and tackle issues as they arise while keeping the grand plan (core stability etc.) in mind. I'd seek advice from a physio before taking up any activity though, I got banned from yoga and pilates by my physio as I wasn't using my muscles properly, unbalanced my hips and put my SI out loads she'll let me do it now I know how to deal with it though. You might also want to get your GP to refer you to a pain clinic or something similar, they can be good at advice when you've no idea what to do and very reassuring.

There will be good days and bad days but you'll still keep going, give us a shout if you need a bit of a pep talk

LOlxxx

[fawn2388]

Thanks for the replies. It's nice to know I'm not crazy after all. Can someone help explain the Beighton Score, such as the 'non hypermoible' score. You can do it in medical terms... I'm a medical laboratory sciences major... I can save your life... and I'm a paramedic. I've tried to not let it ruin or take control my life, but it is hard not to. I want to go to medical school (I'm begining to look around... ahhh! scary!) to be a medical examiner, but I'm a little hesistant. Sorry to ramble on, any of your expirence bad dislocations like me?

[Blaadyblah]

Please try searching - most of us suffer dislocations or subluxations with a fair degree of frequency. The Beighton tests are d3escribed in clinical terms on the main website rather than in the forum as are the other criteria for an HMS diagnosis. It's a bit difficult to say whether anyone's dislocations are as bad as yours or anyone else's - I've had some pretty nasty ones myself and seen some pretty bad ones too. I have a really nasty dislocation on average three or four times a month (often more depending on how active I am at the time) with subluxes several dozen times a day if that's any help? For example I dislocated both shoulders within 18 hours of each other at the end of last week and I'm still suffering for it, will do for a couple of weeks. By the time that's started to calm down my hip will have dislocated - looks like another couple of days - probably during a long car journey this weekend in fact.

On the upside I was pretty mobile yesterday morning and didn't need a stick to get around the office (12x18 feet).

[Finarda]

You said that they had ruled out EDS because of a blood test? I don't believe that's possible - I know that they can rule out the Vein type, but not hypermobility type through blood tests. I was diagnosed with EDS in general because I had symptoms of all three main types, and then when the blood tests came back negative, they narrowed it down to EDS - Hypermobility.

Fiona

[fawn2388]

The note said it ruled out the "dangerous" types of EDS. Basically I don't have to worry about an anyresum anymore than the normal person. Although, it is a common factor of death in one side of the family. I don't go back til Jan, since she is only in the office 1 day a week for 4 hours... so I'm attempting to be patient as I can be, but my orthopedic surgeon may push for a sooner appointment due to that my TTT that I had in July is no more healed than the day he cut it and it's really concerning him that it may a progessive form hense why lately I've felt like I've been falling apart. I'm just really fustrated. It seems to affect soo much of my body and soo many doctors have just brushed it off as 'flexible' or 'low pain tolerance' or the million other things I've been called.