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cardiactec

Eds Vs. Simple Hypermobility?

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Cant you JUST be hypermobile without having EDS? how would a doc make that determination?? -- wouldnt a skin biospy show abnormal collagen structure for both (just someone who is hypermobile vs. someone with eds?) ?? sounds like it would be a hard call to make as to whether or not they'd say "yeah your just hypermobile/flexible" vs "wow, you have eds".....

the geneticist i saw basically said i have VERY loose joints that are easily hyperextended along with MVP, but how would JUST THAT classify me to have EDS?? doesnt really make much sense??

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My daughter is double jointed- the doc didn't seem concerned at all. Her skin doesn't seem different- tho............

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Cardiactec, yes, you can have just hypermobility without any other problems. However, based on the fact that you have issues with your autonomic functions, GI tone, and joint instablility, I can understand why the geneticist would think EDS is a better fit than "benign hypermobility".

Nina

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How exactly is EDS diagnosed? I've wondered if I have this as doctors have commented that my joints hyper-extend, I've had problems with loose ligaments, joint pain has been increasing, etc.

Do you see a geneticist to have it diagnosed? What are the tests/evaluations?

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Hi Rachel,

I saw a geneticist, just because my neuro knew it was out of his league to make that type of diagnoses......the geneticist also said to me that an dermatologist can make the diagnoses, and that typically actual testing for EDS is done with a dermatologist -- that is where i'm having my skin biopsy done in a couple weeks for them to actually study the collagen structure...............definitively, EDS is usually diagnosed based on clinical assessment (i think nina knows more about this than me -- i think it's you have to have 5 out of 9 max symptoms/findings for the diagnoses)...........they then can see if you have vascular involvement by doing a skin biopsy -- i think a skin biospy more or less just proves that the collagen looks abnormal under microscope and from there they can determine if there is also vascular involvement and not just a hypermobile form eds? i think.

you should ask your doc to send you to a geneticist or dermatologist both for clinical assessment/physical exam and a skin biopsy.....

i hope you get some answers here soon as to what exactly is going on.

angela.

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I probably also have one of the less serious forms of EDS (hypermobile joints, MVP, get subluxations from most anything) but wonder what difference, if any it would make to a treatment plan? I haven't explored getting tested because I don't think there are treatments. I had prolotherapy for my knees and that did help, but it is an indirect treatment (tightening the ligaments).

Anyone one know if an official diagnosis makes a treatment difference?

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hey nina, i think you're right -- that is, perhaps why she really thinks there is EDS going on -- because i have more than just hypermobile joints, but also have ortho intolerance, blood pooling, GI problems, ah the list goes on.......

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The 5 out of 9 is on the "Beighton Scale", which you can read about by doing a search of the forum's previous posts. It is usually how the primary dx is made. All the other issues, like GI and autonomic issues, are considered minor criteria that help to "complete the picture". nina

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Dermatologist may not be the one to make the dx--unless they are really familiar with EDS; it all depends on if they know what to be looking for. It can be any of your docs, so long as they know about all the varieties of EDS.

For me it was my cardiologist, locally, after I suggested I might have it, and he then asked more questions of me and did the run through of the physical exam for hypermobility.

Keep in mind, some docs have a misconception about how stretchy your skin should be or how frequently you dislocate--these are misconceptions about some types, but accurate for others. For me, my gyno thinks I'm misdiagnosed b/c I don't have skin that stretches like "silly putty"--I keep trying to tell him that's classical EDS, and I have hypermobile type--which is a different set of characteristics, but he just recalls whatever 5 minutes of training he got in med school and wants to try to stretch my face skin to see if I'm "stretchy" ;) goofball.

Actually, locally, my most knowledgeable doc is my EYE doctor! He wrote several papers on treating corneal issues with people who have EDS--i happen to have a classic finding, a thinner than normal cornea. I am, therefore, NOT a candidate for laser vision correction b/c they could possibly burn through the cornea, which would be VERY bad.

Nina

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I was diagnosed officially by Mark Lavallee, who is in sports medicine. A physiatrist first suggested it, as I kept coming in for one unstable joint after another. And a couple of other physiatrists raised the question of hypermobility.

the genetcisit agreed I had "significant hypermobility" and "skin hyperextensibility," but took a while to really decide it was eds, sice i'm not as extreme as many. but she couldn't find anything else that fit the symptoms, so agrees now.

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my POTS doctor gave me an associated diagnosis of hypermobility joint syndrome. No EDS, because this is not in my family. It's a "syndome" instead of just "hypermobility" because I have medical problems associated with the extra motion (dislocations, subluxations, cartelage degenerations, nerve impingement, in wrists, knees, ankles, jaw, shoulders). The scale about how far you can twist your joints, pull back your fingers, etc. doesn't work for me. I mean, my joints are clearly medically loose, and I have the injuries to demonstrate this...but I cannot pull my finger back or any of that. I think that if my muscles weren't deconditioned from the POTS, I wouldn't have a joint problem. But you never know.

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The simple answer, as Nina said, is YES...you can be hypermobile without having EDS!

A good geneticist would be able to make this determination. There is no skin biopsy for Hypermobile type EDS. It is a clinical diagnosis.

I'm a person who has a few signs of it, but certainly not enough to say I have EDS or that it is the cause of my problems.

If you want the down and dirty on EDS, it is a very frequent topic of conversation here on the boards...I would recommend doing a TOPIC search and seeing what might help you...we've discussed diagnosis, how we got there, etc. etc....

Emily

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just to add my 2 cents worth...my wife (the patient) and i just got back from an extensive visit w/none other but the guru, dr. grubb. going back for a moment, my wife was seen locally by a geneticist in aug '06. she clinically diagnosed her w/eds-hypermobility (which seems to be a genetic/hereditary issue). back to yesterday...dr. grubb said that my wife scored 8 of 9 on the beighton. he also said that most of the medical community no longer uses the term eds, since when it was originally used it also carried about 18 types and then sub-types as well. the problem was when the powers that be decided to change, they never consulted w/the geneticists, thereby making them mad. so, today, most doctors just use hypermobility instead of eds as a dx. eds really referred to type 1. it was also quite amazing to see how the hypermobility plays such a major role in my wife's pots/ncs condition. the dots can be closely connected.

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Corey,

Isn't the guru great? He gave me the same spill when I saw him back in Sept. I also scored 8 of 9 on the Beighton. I also have POTS/NCS.

Cardiactech,

Good luck with your journey on this subject. We have PM's each other before and you know what I think. We are very similar. You probably have it. How severe, I do not know. I hope you get to see the guru, Dr. Grubb and he can answer all your questions.

Susan

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thanks all for your replies. my geneticist actually called me monday morning and told me that she spoke with two docs who are very interested in my case, that i definitely have EDS/hypermobility (scored 8 out of 9) and that the skin biospy wouldnt prove or disprove a diagnosis of eds, but like you all have said, it is based on clinical assessment == so i asked her again "so do i definitely have eds" and she said i did and in fact, i could very well have vascular involvement after consulting with these two other docs, considering my mom has aortic dilation with no known cause and for other med family factors. she said she wants me to have an annual cervical MRI (because of very possible subluxation of my neck) -- she was so crazy obsessed with my neck for some reason and how far i could rotate it (i dont know why she thought it was so significant, personally i didnt think i could rotate my neck THAT much, to the point that she kept asking me if i had ever broken it)....

.....she also said she wants to continue to monitor my aortic root via echo annually because that is a big problem that can occur in eds -- is this with just any type of eds that aortic dilation can occur or is it more specifically with vascular eds???

so sounds like i have eds......and she sounds all excited about this, that there is a link here with eds and pots.......hope i get some even further answers as we go along with this......she is going to have my mom and sis and me go through some genetic blood tests to see what we can see with genetic mutations =- she said it is more the way to go than to just do a skin punch.....

do you guys know if insurance pays for skin punch? this geneticist said they do not.......

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