little_blue_jay Posted July 25, 2014 Report Share Posted July 25, 2014 The more I read about POTS and Ehlers-Danlos often being found together (as well as Asperger's which I'm 99% sure I have) the more I think I may have EDS. The thing is, most of the criteria I keep seeing say that hypermobile joints are practically a pre-requisite for diagnosis.I kind of have the "flying bird hand sign", definitely have the "hand holding the head sign", "square shoulders sign" I'm not sure of but it appears like I do, and on another list the "farmers' or crookneck thumb sign" is mentioned which I definitely do have. Other than those I don't think I am hypermobile at all - can't touch my thumb to my forearm for example. Unfortunately the signs I have are not on the accepted Brighton criteria list. This pdfhttp://www.oreds.org/uploads/3/1/5/0/3150381/drbravowhentosuspect.pdfseems to be the most liberal in terms of when to suspect EDS. It states "one" of those signs "is enough to suspect JHS". It also states that " someone can have no lax joints (Beighton score of 0/9) and still have JHS if she has alteration of tissues like varicose veins.... " I have several of those listed. I see my doctor next week when I go to pick up the forms he filled out for my welfare worker and I will ask him about this. I've read of doctors though who test you for hypermobility and if you're not they say 'can't be EDS then'! Does anyone else here suspect they have EDS but without the hypermobility? Or has anyone been diagnosed with EDS but without being hypermobile? Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted July 25, 2014 Author Report Share Posted July 25, 2014 http://www.oreds.org/uploads/3/1/5/0/3150381/edssymptomlist2012.pdf This is the list that mentions the crookneck thumbs. I have alot of signs on that list! Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 25, 2014 Report Share Posted July 25, 2014 Little blue jay,I have EDS and happen to be hypermobile. BUT, I have tried to stress many times on this forum that being hypermobile is far from the only diagnostic criteria that can and does indicate EDS. The diagnostic criteria change depending on the type you have and even the hypermobile type has a great deal of variability. For example, blueish tinged schlera (the whites of your eyes) or having a high soft palate are signs visible to doctors. The problem is that, even in the general medical community, EDS is a hypermobility disease and that's just not the case. I believe it is why so many of us go undiagnosed until we figure it out for ourselves and then sought out a doctor who is an expert in the field to confirm the diagnosis. A site that has good diagnostic criteria for each type is www.ednf.org. If you can't really find what you're looking for the moderator of that forum goes through all the posts and will post links to research or resources for you if you ask what you're looking for. One of the things that also affects the hypermobility criteria is age and other factors lime arthritis. Well versed docs know this. Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted July 25, 2014 Author Report Share Posted July 25, 2014 Thanks, Katybug! I did see the mention of the sclera, I don't have that but I do have a high palate and very overcrowded teeth and that is mentioned on that second list! I have been on that site once or twice to scare myself by reading about the vascular type of EDS (I am pretty sure I don't have that type!) I think I will join the forum there. I've already read a few of their threads when I've googled EDS and a certain aspect like lung issues. I have this weird feeling in my lungs when I first wake up, it is like an old accordion that doesn't want to open up and I can actually hear an odd noise in my lungs when taking a first deep breath. Doesn't happen again for the rest of the day. Anyway when I started researching EDS and read about collagen and connective tissue the light began to dawn with this lung symptom. I know shortness of breath comes along with POTS but it's the odd noise of trying to expand my lungs that lead me to possible EDS connection! Plus I have a guy friend who has asked me a hundred times "why is my skin so soft"! Sorry for rambling! Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted July 25, 2014 Report Share Posted July 25, 2014 My specialist suspects but didn't order testing. Treatment is the same as what I'm doing now Quote Link to comment Share on other sites More sharing options...
Goschi Posted July 25, 2014 Report Share Posted July 25, 2014 I sometimes suspect to have it, as I find myself getting bruised very easily, having a rather thin and soft skin (though not too stretchy) and I had a varicocele, when I was 14 years old.However, I am not hyperflexible at any joints, even the contrary, to be honest.Anyway, I think about making the test for the vascular EDS. Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted July 25, 2014 Author Report Share Posted July 25, 2014 Bigskyfam & goschi, is it just one test for all the types? Or is it a separate test they'd have to do for each type they suspect you of having? (I've read someone can have more than 1 type?) My doctor would have to send me to a geneticist correct? I've only read a bit about testing for this and I'm confused (as usual LOL) I will ask my doctor when I go see him next week though! Wish I could print out the list on the second link but I have no printer! I'd like to get the test done, I would like to know if I'm on the right track. Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 25, 2014 Report Share Posted July 25, 2014 There is a gene test for vascular type that will show up in 95% of people that have VEDS. There are another 5% that have VEDS but don't have the gene mutation. There is one other type that has a test but it don't remember which it is. Classic and hypermobile types do not yet have a test and have to be made by clinical diagnosis. You can have crossover of more than one type. While a geneticist, especially one that specializes in EDS would probably be your best bet at accurate dx, other docs could make the dx. Some rheumatologists are familiar. Www.ednf.org is also good to find a doc in your area, including anyone overseas as there are lots of members outside the USA. Quote Link to comment Share on other sites More sharing options...
blueskies Posted July 25, 2014 Report Share Posted July 25, 2014 I have a lot of those symptoms, down to the weird ears ( finally an explanation for them, it seems). But not sure that collecting another diagnosis, if I do qualify, is going to do me any good. Thanks for posting the link, little blue Jay. It was informative. And easy for a non medical person like me, to read.Blue Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 25, 2014 Report Share Posted July 25, 2014 Having an EDS diagnosis may help explain certain symptoms and even allow more targeted treatment of symptoms. Additionally, even if you don't have the vascular type, both my geneticist (who is an EDS specialist) and my cardiologist (who happens to be familiar with EDS) both insist on a yearly echo of my heart and aorta. While I have hypermobile type, I have 3 valves that show laxity including MVP and they also say anyone with EDS should have their aorta monitored for anyplace that looks like it could be becoming susceptible to aneurysm. Quote Link to comment Share on other sites More sharing options...
blueskies Posted July 25, 2014 Report Share Posted July 25, 2014 Hi Katy, Your point about MVP is a good one. Specialist says I have it but I am waiting on echo results to confirm if it is MVP or another thing.Blue Quote Link to comment Share on other sites More sharing options...
IceLizard Posted July 26, 2014 Report Share Posted July 26, 2014 Hi,I just want to add that hypermobility of the joints decreases as you age and is affected by degenerative diseases like arthritis. My mother was hypermoblie when she was young, but as she aged she developed arthritis that made her joints stiff. Doctors should take this into account and recognize that there are signs other than hypermobility to look for, especially in someone over 50. If you look at the Brighton Criteria for Joint Hypermobility Syndrome you can see this how this is the case.http://hypermobility.org/help-advice/hypermobility-syndromes/the-brighton-score/This webpage also talks about the difference, or lack thereof, between Joint Hypermobility Syndrome and EDS Hypermobile type (if you are interested). Quote Link to comment Share on other sites More sharing options...
Christy_D Posted July 26, 2014 Report Share Posted July 26, 2014 My daughter was recently diagnosed with EDS. The doctor said she had never seen it skip a generation, so I must also have it. I can't remember if I was hypermobile when I was young, not overly so anyways. I have neck and shoulder issues though. My daughter couldn't do some of the tests for the Beighton scale but was able to do other tricks that weren't on the list that the doctor asked her to do. I think some doctors are more strict when using the Beighton scale and some look more at the entire picture and symptoms occurring. Quote Link to comment Share on other sites More sharing options...
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