Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Welcome!! lol It's a rather exclusive club you know. I think we ought to have official membership cards for those with EDS.... I can do the tongue thing, but not to my once thank you very much..... Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Welcome!! lol It's a rather exclusive club you know. I think we ought to have official membership cards for those with EDS.... I can do the tongue thing, but not to my once thank you very much..... Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Welcome!! lol It's a rather exclusive club you know. I think we ought to have official membership cards for those with EDS.... I can do the tongue thing, but not to my once thank you very much..... Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi , > his response was " people with the vascular type aren't hypermobile. " Well, let's see. According to the new Nosology, hypermobility of the small joints is a minor diagnostic criteria for VEDS. It tends to be limited to the small joints though. However, the tendency to be a certain way doesn't mean it is always the case - especially considering how variable EDS can be. And, as you said, there is overlapping of symptoms, so even if you are Hypermobile type, it doesn't rule out Vascular complications. The risks for VEDS issues are lower in HEDS, but they aren't completely nonexistent. > So, my > question is how many of you with the vascular form are also > hypermobile in multiple joints? I'm HEDS, not VEDS, but I have known plenty of people with VEDS who had hypermobility. My best friend, April, had hypermobile fingers to the point of needing SRS splints. She also had knee problems as well as a few other joints. Her main problems were the small joints, but she had some minor issues with the larger joints as well. > When he asked me if I could touch my tongue to my nose, I said that I used to My husband (also HEDS) can, but I can't. > be able to, but couldn't any more, but that I could fold my tongue > backwards. He seemed impressed by this and wanted to take a picture I can point it back there, but I can't bend it so far that it touches the back of the tongue. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi , > his response was " people with the vascular type aren't hypermobile. " Well, let's see. According to the new Nosology, hypermobility of the small joints is a minor diagnostic criteria for VEDS. It tends to be limited to the small joints though. However, the tendency to be a certain way doesn't mean it is always the case - especially considering how variable EDS can be. And, as you said, there is overlapping of symptoms, so even if you are Hypermobile type, it doesn't rule out Vascular complications. The risks for VEDS issues are lower in HEDS, but they aren't completely nonexistent. > So, my > question is how many of you with the vascular form are also > hypermobile in multiple joints? I'm HEDS, not VEDS, but I have known plenty of people with VEDS who had hypermobility. My best friend, April, had hypermobile fingers to the point of needing SRS splints. She also had knee problems as well as a few other joints. Her main problems were the small joints, but she had some minor issues with the larger joints as well. > When he asked me if I could touch my tongue to my nose, I said that I used to My husband (also HEDS) can, but I can't. > be able to, but couldn't any more, but that I could fold my tongue > backwards. He seemed impressed by this and wanted to take a picture I can point it back there, but I can't bend it so far that it touches the back of the tongue. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi , > his response was " people with the vascular type aren't hypermobile. " Well, let's see. According to the new Nosology, hypermobility of the small joints is a minor diagnostic criteria for VEDS. It tends to be limited to the small joints though. However, the tendency to be a certain way doesn't mean it is always the case - especially considering how variable EDS can be. And, as you said, there is overlapping of symptoms, so even if you are Hypermobile type, it doesn't rule out Vascular complications. The risks for VEDS issues are lower in HEDS, but they aren't completely nonexistent. > So, my > question is how many of you with the vascular form are also > hypermobile in multiple joints? I'm HEDS, not VEDS, but I have known plenty of people with VEDS who had hypermobility. My best friend, April, had hypermobile fingers to the point of needing SRS splints. She also had knee problems as well as a few other joints. Her main problems were the small joints, but she had some minor issues with the larger joints as well. > When he asked me if I could touch my tongue to my nose, I said that I used to My husband (also HEDS) can, but I can't. > be able to, but couldn't any more, but that I could fold my tongue > backwards. He seemed impressed by this and wanted to take a picture I can point it back there, but I can't bend it so far that it touches the back of the tongue. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Well, I saw the geneticist yesterday and I am now an official EDSer. He diagnosed me with the hypermobile type ... Oh. and another odd question... can anyone fold their tongue backwards so that the tip is aimed to the back of the mouth and the top surface (where the taste buds are) is actually touching itself (without using your teeth or roofof your mouth to hold it)? ----------- (1) Does that mean you are like the little puppy that followed us home and we can keep you? (2) Can't everybody? Seems like everytime I turn around, someone on the list comes out with some wierd thing that I've done for years and never associated with anything or even thought strange. And yes, I most definitely can bend the tongue in half, doubled over backwards, and pointed toward the rear. How about rolling the sides up toward each other so your tongue looks like a canoe? I can do that too. Is that also a symptom I didn't know about? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Well, I saw the geneticist yesterday and I am now an official EDSer. He diagnosed me with the hypermobile type ... Oh. and another odd question... can anyone fold their tongue backwards so that the tip is aimed to the back of the mouth and the top surface (where the taste buds are) is actually touching itself (without using your teeth or roofof your mouth to hold it)? ----------- (1) Does that mean you are like the little puppy that followed us home and we can keep you? (2) Can't everybody? Seems like everytime I turn around, someone on the list comes out with some wierd thing that I've done for years and never associated with anything or even thought strange. And yes, I most definitely can bend the tongue in half, doubled over backwards, and pointed toward the rear. How about rolling the sides up toward each other so your tongue looks like a canoe? I can do that too. Is that also a symptom I didn't know about? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Well, I saw the geneticist yesterday and I am now an official EDSer. He diagnosed me with the hypermobile type ... Oh. and another odd question... can anyone fold their tongue backwards so that the tip is aimed to the back of the mouth and the top surface (where the taste buds are) is actually touching itself (without using your teeth or roofof your mouth to hold it)? ----------- (1) Does that mean you are like the little puppy that followed us home and we can keep you? (2) Can't everybody? Seems like everytime I turn around, someone on the list comes out with some wierd thing that I've done for years and never associated with anything or even thought strange. And yes, I most definitely can bend the tongue in half, doubled over backwards, and pointed toward the rear. How about rolling the sides up toward each other so your tongue looks like a canoe? I can do that too. Is that also a symptom I didn't know about? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 HaHa! Maybe someone should design them (or do they already exist in the form of medic alert tags?) Oh, and a secret handshake!! Every club needs a secret handshake. > I think we ought to have official membership cards for those with > EDS.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 HaHa! Maybe someone should design them (or do they already exist in the form of medic alert tags?) Oh, and a secret handshake!! Every club needs a secret handshake. > I think we ought to have official membership cards for those with > EDS.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 HaHa! Maybe someone should design them (or do they already exist in the form of medic alert tags?) Oh, and a secret handshake!! Every club needs a secret handshake. > I think we ought to have official membership cards for those with > EDS.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Barb, thanks for your response. The interesting part of having VEDS (if it were ever to be diagnosed, not likely at this rate because the geneticist didn't really want to pursue it) would be that the HEDS seems to come from my dad's side, and the possibility of VEDS would come from my mom's side (although neither has been diagnosed or even heard of EDS until I told them about it). So, having it from 2 sides of the family might explain widespread hypermobility with VEDS, but then I wonder what the odds are that 2 people with undiagnosed EDS (and of different types) would meet and marry... (I know that you and your husband both have EDS, Barb, but I also understand you met at an EDS conference). On the other hand, my vascular component could just be part of the HEDS (wasn't there talk about a new type being revealed at the conference that is a hypermobile with vascular issues type?). Ah, the confusion!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Barb, thanks for your response. The interesting part of having VEDS (if it were ever to be diagnosed, not likely at this rate because the geneticist didn't really want to pursue it) would be that the HEDS seems to come from my dad's side, and the possibility of VEDS would come from my mom's side (although neither has been diagnosed or even heard of EDS until I told them about it). So, having it from 2 sides of the family might explain widespread hypermobility with VEDS, but then I wonder what the odds are that 2 people with undiagnosed EDS (and of different types) would meet and marry... (I know that you and your husband both have EDS, Barb, but I also understand you met at an EDS conference). On the other hand, my vascular component could just be part of the HEDS (wasn't there talk about a new type being revealed at the conference that is a hypermobile with vascular issues type?). Ah, the confusion!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Barb, thanks for your response. The interesting part of having VEDS (if it were ever to be diagnosed, not likely at this rate because the geneticist didn't really want to pursue it) would be that the HEDS seems to come from my dad's side, and the possibility of VEDS would come from my mom's side (although neither has been diagnosed or even heard of EDS until I told them about it). So, having it from 2 sides of the family might explain widespread hypermobility with VEDS, but then I wonder what the odds are that 2 people with undiagnosed EDS (and of different types) would meet and marry... (I know that you and your husband both have EDS, Barb, but I also understand you met at an EDS conference). On the other hand, my vascular component could just be part of the HEDS (wasn't there talk about a new type being revealed at the conference that is a hypermobile with vascular issues type?). Ah, the confusion!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 but then I wonder what the odds are that 2 people with undiagnosed EDS (and of different types) would meet and marry... ------------- Considering the article Jill posted yesterday or the day before about Chronic Fatigue and EDS where it said that some researchers estimate at least one out of every nine has at least a mild form of EDS, the odds are probably a lot higher than we would think. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi , Did you tell the MD about the possibility of EDS coming from two sides of the family? It is not entirely impossible. If I had children, that would be the case. I know of at least one other person who did get EDS from both parents. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi , Did you tell the MD about the possibility of EDS coming from two sides of the family? It is not entirely impossible. If I had children, that would be the case. I know of at least one other person who did get EDS from both parents. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 I'm Official! Well, I saw the geneticist yesterday and I am now an official EDSer. He diagnosed me with the hypermobile type (no big surprise there, at least to me). I was slightly dismayed when I told him that I had some concerns about the possibility of having the vascular form due to a diagnosis of vasodepressor syncope, mitral valve prolapse, easy bruising, thin skin, etc. (along with a maternal-side family history of varicose veins, ~~~~~~~ - welcome to the official club....a dubious honor, for sure... I have all the above but not sure on the vasodepressor syncope. I have a meeting with an electrophysiologist tomorrow morning about my possibly having POTS. I have a Variant of EDS - not a true anything but I have symptoms from several categories of EDS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 I'm Official! Well, I saw the geneticist yesterday and I am now an official EDSer. He diagnosed me with the hypermobile type (no big surprise there, at least to me). I was slightly dismayed when I told him that I had some concerns about the possibility of having the vascular form due to a diagnosis of vasodepressor syncope, mitral valve prolapse, easy bruising, thin skin, etc. (along with a maternal-side family history of varicose veins, ~~~~~~~ - welcome to the official club....a dubious honor, for sure... I have all the above but not sure on the vasodepressor syncope. I have a meeting with an electrophysiologist tomorrow morning about my possibly having POTS. I have a Variant of EDS - not a true anything but I have symptoms from several categories of EDS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 I'm Official! Well, I saw the geneticist yesterday and I am now an official EDSer. He diagnosed me with the hypermobile type (no big surprise there, at least to me). I was slightly dismayed when I told him that I had some concerns about the possibility of having the vascular form due to a diagnosis of vasodepressor syncope, mitral valve prolapse, easy bruising, thin skin, etc. (along with a maternal-side family history of varicose veins, ~~~~~~~ - welcome to the official club....a dubious honor, for sure... I have all the above but not sure on the vasodepressor syncope. I have a meeting with an electrophysiologist tomorrow morning about my possibly having POTS. I have a Variant of EDS - not a true anything but I have symptoms from several categories of EDS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Re: I'm Official! And yes, I most definitely can bend the tongue in half, doubled over backwards, and pointed toward the rear. How about rolling the sides up toward each other so your tongue looks like a canoe? I can do that too. Is that also a symptom I didn't know about? ~~~~~ I can roll the tongue like a canoe and so can . I think that has something to do with a different genetic trait. had a genetics section in biology class. The tongue curling and a bendy thumb were talked about as being passed on genetically. Is a bendy thumb exclusive to EDS too? Or is it a part of other non-collagen disorders? Anyone? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Re: I'm Official! And yes, I most definitely can bend the tongue in half, doubled over backwards, and pointed toward the rear. How about rolling the sides up toward each other so your tongue looks like a canoe? I can do that too. Is that also a symptom I didn't know about? ~~~~~ I can roll the tongue like a canoe and so can . I think that has something to do with a different genetic trait. had a genetics section in biology class. The tongue curling and a bendy thumb were talked about as being passed on genetically. Is a bendy thumb exclusive to EDS too? Or is it a part of other non-collagen disorders? Anyone? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Re: I'm Official! And yes, I most definitely can bend the tongue in half, doubled over backwards, and pointed toward the rear. How about rolling the sides up toward each other so your tongue looks like a canoe? I can do that too. Is that also a symptom I didn't know about? ~~~~~ I can roll the tongue like a canoe and so can . I think that has something to do with a different genetic trait. had a genetics section in biology class. The tongue curling and a bendy thumb were talked about as being passed on genetically. Is a bendy thumb exclusive to EDS too? Or is it a part of other non-collagen disorders? Anyone? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Yes, we discussed that the hypermobility comes from my dad and the vascular aspects run on my mom's side, but we didn't link the two together when he said VEDS doesn't show hypermobility. I made the connection that I could potentially have both types just this morning. He asked me to try and get more info on my mom's colon surgery, so when I let the office know if I was able to get that info, I'll mention the possibility at that time. I also just learned that my maternal grandfather (the one who had the aortic aneurysm) almost died of a ruptured appendix as a teenager, so that might be beneficial for the geneticist to know also. I'm wondering if the other person you know who got EDS from both parents inhereited 2 different types, and did the parents know they had EDS before their child was diagnosed? Thanks. > Hi , > > Did you tell the MD about the possibility of EDS coming from two sides of > the family? It is not entirely impossible. If I had children, that would > be the case. I know of at least one other person who did get EDS from both > parents. > > -Barb Quote Link to comment Share on other sites More sharing options...
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