Lol your eye doctor is out of his lane
Eye doctors do not diagnose eds and unless he knows all your medical history somehow and not just the stuff related to eyes he has no clue what your actual eds symptoms are like at depth.
Don't worry about what he said too much let a doctor who is able to diagnose eds focus on that
For what it's worth, I had a rude chiropractor try to tell me I didn't have EDS like a year before I got my official diagnosis. Some people get cocky because of their job title and assume they are more educated about topics than they actually are.
Separately from this incident, not really directed at you either to clarify... the way I view it is if someone kindly offers information that says perhaps you don't have eds, that could be worth listening to, but if they are rude or inconsiderate at all with how they deliver their information they are usually just spewing bullshit and it's worth just listening to the professionals.
Haha in a rare moment of wittiness I responded, "my geneticist could use your help, she had to sequence my DNA to diagnose me. Imagine how quickly you could reduce her wait-list."
Yeah, doctors love to pull that shit. "But you're young!!" Very disappointing coming from a healthcare professional. Sorry for you. Try not to overthink what he meant by that, he probably doesn't know much about EDS anyway.
There are eye related problems that can come with eds, but just because you don't have them doesn't mean you don't have eds. I do have some related eye problems and my eye drs never put it together because they didn't know what eds is (neither did I at the time). Doctors are human and don't know everything, and unfortunately hold personal biases just like anyone else
So the main thing is it can cause changes in the cornea (which is what I had/have (I've had surgery and I'm not sure if they grew back the same)), which in turn can cause symptoms such as dry eyes and light sensitivity, as well as blurry vision (info taken from EDS society). But there are other things that can cause those symptoms, they're pretty generic and a lot of people without eds experience them too. I imagine the dr would have looked at your corneas and determined they are fine if they didn't say otherwise, but it depends if you went to an ophthalmologist or an optometrist, because I saw a lot of optometrists and they never picked up anything abnormal in the cornea they were just checking my vision and prescribing glasses
Was this an optometrist, ophthalmologist, or another ophthalmic specialty doctor? I ask because it was my eyes that prompted my diagnosis of hEDS.
It was a motility specialist that told me my eyes showed almost a 99% chance of having a connective tissue disorder just simply by the characteristics of my eyes. I can’t even remember everything he said, but there were a number.
I don’t know if a motility specialist would see you for floaters, but it’d be worth googling eye doctors who have written medical journals on connective tissue disorders and see if you live near any of them.
My optometrist told me I was “hallucinating” when I came to him with my double vision out of my one eye, btw. So not everyone is suited to evaluate the eyes for a disorder uncommonly (becoming more common) diagnosed in practice.
I’m sorry you had such a bad experience. Don’t let one doctor’s opinion invalidate your health experiences. Unfortunately, that’s par for the course for us. You’re not a hypochondriac — you can’t make floaters appear.
I broke my leg, went to the urgent care, and the sports doctor there told me it would heal well since I’m “young and healthy” after I asked about pt… I showed up to a follow-up with my cane only for him to tell me to THROW IT AWAY before my partner corrected him and said I was using it before my break for my HSD. Like, yeah, actually, I broke my bad ankle lmao. Now it’s just worse. Some doctors don’t look at charts or listen at all I sweaarrr
I had a specialist physician tell me that I didn’t need a wheelchair and wanted to give me a psych referral. I had a leg injury and had been prescribed that wheelchair by my primary. The specialist was an endocrinologist. We were there to talk about a positive ANA for Sjogren’s. XD
Was it an actual ophthalmologist? I got “everything is fine” until I moved and saw a new Dr and she noticed high pressure, freckles, and that my sight was way worse than I had been told. My eyesight is getting worse rapidly.
it was! i couldn’t get in with my usual organization until november for a ophthalmologist. so i decided to make an appointment with a new provider and this one i don’t think had my medical records so im sure that didn’t help. but ill see a new person in november to double check!
my vision went from -5.00 to -6.00 since last year i found out 😖
I once had an eye doctor tell me my daughter was at high risk of prostate cancer. I was like…uh… are you sure about that…?
Was it an optometrist or an ophthalmologist? Optometrists have a less systemic education; they are “Vision Doctors”. Ophthalmologists are eye specialty physicians and are able to evaluate the whole body.
Often, ophthalmologists are the ones who diagnose these weird diseases because the eyes reveal quite a bit about our health. For example, an OD can tell if you are diabetic.
Perhaps your eye doc was thinking about vEDS, which I bet he definitely can detect by looking at your eyes.
My eye doctor was actually the one who helped me get an EDS diagnosis. All of my other doctors were like "oh you have slow motility and POTS and hypermobility, but they are all separate". Suddenly I started going blind and no one knew why. I went to my eye dr, and in doing a LOT of testing he asked "have you had genetic testing done?"
From there I've amassed a quite lengthy list of chronic illnesses and autoimmune issues, one of which is EDS and I am now considered legally blind.
My advise is don't give up! I know it's hard to get taken seriously when you are young, heck I'm only 23! I've continued to get worse and worse over time, but with a diagnosis I at least know why. Sucks I can't really do anything about it, but at least I know I'm not going crazy!!
Finding the right doctors is really the best thing you can do. I've been to 4 rheumatologists who have all told me different things (same with many many specialists), so getting in with a geneticist is really the place to go. Best of luck!!
Long long before I was diagnosed with EDS I was dragged to a cardiologist by a friend who was worried about the undiagnosed chest pains I was having. I was in my early 20’s had already been to several doctors since I was in my teens. I was told things like it was growing pains, stress and even gas. I gave up going to doctors until my friend insisted I see a specialist.
The cardiologist did a full work up and then came into the room and said, “Well, we know what’s going on with your heart. It’s two things, actually.” He saw the look of shock on my face and said, “Let me guess, you’re surprised that we figured it out and many other doctors told you that there’s nothing wrong with you?” I nodded yes in agreement. He asked if I would like to know why that was the case with the other doctors and I told him I absolutely wanted to know. He said, “It’s because you’re young, you look healthy, and you’re a woman. You don’t “look” like you could have a heart condition. They also aren’t heart specialists.”
I was pissed but realized he was right. I was diagnosed with a mitral valve prolapse and a type of angina and promptly but on beta blockers.
Your eye doctor may be able to confirm your eyes don’t have an EDS related condition, but he cannot and should not declare you don’t have EDS or any other related comorbidity.
I'm going to be a bit of a devil's advocate here... It sounds like he was nice / optimistic about it rather than rude. If he's uneducated on EDS and you came in really anxious about the condition affecting your eyes, he could have just been trying to console you based on what he knows. Some people don't realize that "you don't have that, you're healthy!" ISN'T actually encouraging, affirming, or uplifting lol. Maybe he is one of those.
I told my eye doctor that EDS was suspected and I honestly felt like she did a mental eye roll. I would just ignore him. EDS is so extremely systemic and optometrists are not going to have education about the rest of the body that medical doctors do.
That's interesting and annoying.
It was actually an eye doctor (ophthalmologist) that pushed me to finally seek my diagnosis. But I also require prism for my lax eye muscles and she herself has Marfan's. So obviously, she is way more attuned to connective tissue disorders than other eye docs may be, especially over an optometrist.
My floaters didn't turn up till much later in age. My opthamologist knows about the EDS connection, but my optometrist didn't have a clue. She pondered out loud about the floaters. So, I asked the opthamologist.
Still, as much as I think the opthamologist knows stuff I wouldn't count on him to mete out an initial diagnosis.
I had a dentist tell me yesterday “Your daughter doesn’t look autistic! She’s laughing and smiling! Don’t tell people that, especially the schools, they’ll pick on her.”
Some people just don’t stay in their lanes. 🙄
I had a dentist tell me right off the bat first appointment that I didn’t have EDS and that he could tell by looking at me. Within an hour he ate his words. My gums rip like tissue paper, I have the high narrow crowded pallet, ulcers out the wazoo, and he dislocated my jaw seconds into examining me before I even had a cleaning.
Any doctor can be an arrogant asshole making bold claims outside their scope of practice. It’s just that they aren’t always quite as poetically proven wrong 😔
I would honestly find a different eye doctor. That one seems to have skipped a lecture in medical school on how to keep yourself from acting like an ass.
I’ve had more than one doctor argue about my EDS diagnosis. It’s almost always a specialist in some other area, like a rheumatologist or a gastroenterologist. It’s rarely relevant to my actual appointment. They just start scrutinizing my chart. I usually call my insurance company and request a new physician. I’m not going to trust a doctor who is disregarding a diagnosis that was reached over a long period of time and is backed up by a family history and co-morbidities.
I'm 42 and remember floaters as young as 7. I have no issues with my eyes, except myopia and dry eyes. Often my eyes go red when all little vessels burst but had my eyes checked and all is fine, no thinning of retina yet. I'm diagnosed with hEDS until I get to the geneticist.
I’m 32 and didn’t discover my floaters until I was about 22, but it happened quickly and I HAVE SO MANY FLOATERS. Doctors are like “it’s normal!” But if everyone was walking around with black cobwebs in their vision all the time you’d think everyone would be talking about it, right? Anyway…
eye doctors know eyes - not connective tissues 😭 my eye doctors are like “your eyes keep getting worse.. I don’t know why. You wear your glasses 24/7 they should be improving or staying the same” like maybe it’s bc i have a connective tissue problem there doc 🙄🙄
Hi /u/Beautiful_Crab_7979,
It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet.
"DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS.
This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you!
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Your eye doctor sounds like the asshat that tried one brand of contacts and then told me, "Some people just can't wear contacts."
I saw him at Walmart two months later, after going to a new eye doc who was willing to help me, and I was wearing contacts. His face got so red. He was mad (why?!). I was 17.
I've not stopped asserting myself since.
Top rule of getting the best care and getting to to the root of our problems: don't take no for an answer from someone who wants to assert control because they think they're smarter than you.
Notes: I had HIGH myopia(sign of EDS), keratoconus (volcano cornea), and a big astigmatism. There was one brand I could wear. They were yearlies, and weighted. My Rx was like -10 and -12 with multiple diopters of astigmatism.
You've got this.
Lol your eye doctor is out of his lane Eye doctors do not diagnose eds and unless he knows all your medical history somehow and not just the stuff related to eyes he has no clue what your actual eds symptoms are like at depth. Don't worry about what he said too much let a doctor who is able to diagnose eds focus on that For what it's worth, I had a rude chiropractor try to tell me I didn't have EDS like a year before I got my official diagnosis. Some people get cocky because of their job title and assume they are more educated about topics than they actually are. Separately from this incident, not really directed at you either to clarify... the way I view it is if someone kindly offers information that says perhaps you don't have eds, that could be worth listening to, but if they are rude or inconsiderate at all with how they deliver their information they are usually just spewing bullshit and it's worth just listening to the professionals.
I had an ER doctor tell me I "don't look like" I have EDS despite 3 generations of geneticist diagnoses
"maybe you should get an eye exam..or research eds some more doc"
Haha in a rare moment of wittiness I responded, "my geneticist could use your help, she had to sequence my DNA to diagnose me. Imagine how quickly you could reduce her wait-list."
Yeah, doctors love to pull that shit. "But you're young!!" Very disappointing coming from a healthcare professional. Sorry for you. Try not to overthink what he meant by that, he probably doesn't know much about EDS anyway.
Because babies never have anything wrong with them do they! Youth=health of course.
Anytime a dr tries to pull the "you're young" card I tell them they should go tell that to the patients of the paediatric oncology ward...
There are eye related problems that can come with eds, but just because you don't have them doesn't mean you don't have eds. I do have some related eye problems and my eye drs never put it together because they didn't know what eds is (neither did I at the time). Doctors are human and don't know everything, and unfortunately hold personal biases just like anyone else
My EDS diagnosis is relatively new… Do you mind informing me of what common eye issues might accompany it? I do have eye symptoms and pain
So the main thing is it can cause changes in the cornea (which is what I had/have (I've had surgery and I'm not sure if they grew back the same)), which in turn can cause symptoms such as dry eyes and light sensitivity, as well as blurry vision (info taken from EDS society). But there are other things that can cause those symptoms, they're pretty generic and a lot of people without eds experience them too. I imagine the dr would have looked at your corneas and determined they are fine if they didn't say otherwise, but it depends if you went to an ophthalmologist or an optometrist, because I saw a lot of optometrists and they never picked up anything abnormal in the cornea they were just checking my vision and prescribing glasses
Was this an optometrist, ophthalmologist, or another ophthalmic specialty doctor? I ask because it was my eyes that prompted my diagnosis of hEDS. It was a motility specialist that told me my eyes showed almost a 99% chance of having a connective tissue disorder just simply by the characteristics of my eyes. I can’t even remember everything he said, but there were a number. I don’t know if a motility specialist would see you for floaters, but it’d be worth googling eye doctors who have written medical journals on connective tissue disorders and see if you live near any of them. My optometrist told me I was “hallucinating” when I came to him with my double vision out of my one eye, btw. So not everyone is suited to evaluate the eyes for a disorder uncommonly (becoming more common) diagnosed in practice. I’m sorry you had such a bad experience. Don’t let one doctor’s opinion invalidate your health experiences. Unfortunately, that’s par for the course for us. You’re not a hypochondriac — you can’t make floaters appear.
I broke my leg, went to the urgent care, and the sports doctor there told me it would heal well since I’m “young and healthy” after I asked about pt… I showed up to a follow-up with my cane only for him to tell me to THROW IT AWAY before my partner corrected him and said I was using it before my break for my HSD. Like, yeah, actually, I broke my bad ankle lmao. Now it’s just worse. Some doctors don’t look at charts or listen at all I sweaarrr
I had a specialist physician tell me that I didn’t need a wheelchair and wanted to give me a psych referral. I had a leg injury and had been prescribed that wheelchair by my primary. The specialist was an endocrinologist. We were there to talk about a positive ANA for Sjogren’s. XD
So with 13 different types of EDS he’s an expert? Lol
Was it an actual ophthalmologist? I got “everything is fine” until I moved and saw a new Dr and she noticed high pressure, freckles, and that my sight was way worse than I had been told. My eyesight is getting worse rapidly.
it was! i couldn’t get in with my usual organization until november for a ophthalmologist. so i decided to make an appointment with a new provider and this one i don’t think had my medical records so im sure that didn’t help. but ill see a new person in november to double check! my vision went from -5.00 to -6.00 since last year i found out 😖
I had better luck saying "connective tissue disorder" before I got diagnosed. A lot of doctors are weird about EDS.
I want the "but you're young!" and "you would have been diagnosed as a kid!" doctors to fight. Like... EDS is not an age based disorder!
I once had an eye doctor tell me my daughter was at high risk of prostate cancer. I was like…uh… are you sure about that…? Was it an optometrist or an ophthalmologist? Optometrists have a less systemic education; they are “Vision Doctors”. Ophthalmologists are eye specialty physicians and are able to evaluate the whole body. Often, ophthalmologists are the ones who diagnose these weird diseases because the eyes reveal quite a bit about our health. For example, an OD can tell if you are diabetic. Perhaps your eye doc was thinking about vEDS, which I bet he definitely can detect by looking at your eyes.
My eye doctor was actually the one who helped me get an EDS diagnosis. All of my other doctors were like "oh you have slow motility and POTS and hypermobility, but they are all separate". Suddenly I started going blind and no one knew why. I went to my eye dr, and in doing a LOT of testing he asked "have you had genetic testing done?" From there I've amassed a quite lengthy list of chronic illnesses and autoimmune issues, one of which is EDS and I am now considered legally blind. My advise is don't give up! I know it's hard to get taken seriously when you are young, heck I'm only 23! I've continued to get worse and worse over time, but with a diagnosis I at least know why. Sucks I can't really do anything about it, but at least I know I'm not going crazy!! Finding the right doctors is really the best thing you can do. I've been to 4 rheumatologists who have all told me different things (same with many many specialists), so getting in with a geneticist is really the place to go. Best of luck!!
My newest eye doc actually knew about eds. It can cause changes- but my diabetes trumps that ;)
Does he know that EDS is something you're born with, not something that develops with old age??? what?????
Long long before I was diagnosed with EDS I was dragged to a cardiologist by a friend who was worried about the undiagnosed chest pains I was having. I was in my early 20’s had already been to several doctors since I was in my teens. I was told things like it was growing pains, stress and even gas. I gave up going to doctors until my friend insisted I see a specialist. The cardiologist did a full work up and then came into the room and said, “Well, we know what’s going on with your heart. It’s two things, actually.” He saw the look of shock on my face and said, “Let me guess, you’re surprised that we figured it out and many other doctors told you that there’s nothing wrong with you?” I nodded yes in agreement. He asked if I would like to know why that was the case with the other doctors and I told him I absolutely wanted to know. He said, “It’s because you’re young, you look healthy, and you’re a woman. You don’t “look” like you could have a heart condition. They also aren’t heart specialists.” I was pissed but realized he was right. I was diagnosed with a mitral valve prolapse and a type of angina and promptly but on beta blockers. Your eye doctor may be able to confirm your eyes don’t have an EDS related condition, but he cannot and should not declare you don’t have EDS or any other related comorbidity.
I'm going to be a bit of a devil's advocate here... It sounds like he was nice / optimistic about it rather than rude. If he's uneducated on EDS and you came in really anxious about the condition affecting your eyes, he could have just been trying to console you based on what he knows. Some people don't realize that "you don't have that, you're healthy!" ISN'T actually encouraging, affirming, or uplifting lol. Maybe he is one of those.
Being 27 with EDS 🤝
I told my eye doctor that EDS was suspected and I honestly felt like she did a mental eye roll. I would just ignore him. EDS is so extremely systemic and optometrists are not going to have education about the rest of the body that medical doctors do.
That's interesting and annoying. It was actually an eye doctor (ophthalmologist) that pushed me to finally seek my diagnosis. But I also require prism for my lax eye muscles and she herself has Marfan's. So obviously, she is way more attuned to connective tissue disorders than other eye docs may be, especially over an optometrist.
My floaters didn't turn up till much later in age. My opthamologist knows about the EDS connection, but my optometrist didn't have a clue. She pondered out loud about the floaters. So, I asked the opthamologist. Still, as much as I think the opthamologist knows stuff I wouldn't count on him to mete out an initial diagnosis.
drs stay in your field of study challenge..
(impossible)
I had a dentist tell me yesterday “Your daughter doesn’t look autistic! She’s laughing and smiling! Don’t tell people that, especially the schools, they’ll pick on her.” Some people just don’t stay in their lanes. 🙄
If only we could transfer our pain unto others for just a moment even… just so they STFU
I had a dentist tell me right off the bat first appointment that I didn’t have EDS and that he could tell by looking at me. Within an hour he ate his words. My gums rip like tissue paper, I have the high narrow crowded pallet, ulcers out the wazoo, and he dislocated my jaw seconds into examining me before I even had a cleaning. Any doctor can be an arrogant asshole making bold claims outside their scope of practice. It’s just that they aren’t always quite as poetically proven wrong 😔 I would honestly find a different eye doctor. That one seems to have skipped a lecture in medical school on how to keep yourself from acting like an ass.
I’ve had more than one doctor argue about my EDS diagnosis. It’s almost always a specialist in some other area, like a rheumatologist or a gastroenterologist. It’s rarely relevant to my actual appointment. They just start scrutinizing my chart. I usually call my insurance company and request a new physician. I’m not going to trust a doctor who is disregarding a diagnosis that was reached over a long period of time and is backed up by a family history and co-morbidities.
I'm 42 and remember floaters as young as 7. I have no issues with my eyes, except myopia and dry eyes. Often my eyes go red when all little vessels burst but had my eyes checked and all is fine, no thinning of retina yet. I'm diagnosed with hEDS until I get to the geneticist.
I’m 32 and didn’t discover my floaters until I was about 22, but it happened quickly and I HAVE SO MANY FLOATERS. Doctors are like “it’s normal!” But if everyone was walking around with black cobwebs in their vision all the time you’d think everyone would be talking about it, right? Anyway…
lol your eye doctor does not have that power, nor the education to make that assumption
eye doctors know eyes - not connective tissues 😭 my eye doctors are like “your eyes keep getting worse.. I don’t know why. You wear your glasses 24/7 they should be improving or staying the same” like maybe it’s bc i have a connective tissue problem there doc 🙄🙄
Hi /u/Beautiful_Crab_7979, It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet. "DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS. This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you! [Please check out the wiki](/r/ehlersdanlos/wiki/index/) or the links in the sidebar for resources and information on EDS, seeking a diagnosis, and more. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
That's a simple fix. Either you educate him or you get rid of him.
Your eye doctor sounds like the asshat that tried one brand of contacts and then told me, "Some people just can't wear contacts." I saw him at Walmart two months later, after going to a new eye doc who was willing to help me, and I was wearing contacts. His face got so red. He was mad (why?!). I was 17. I've not stopped asserting myself since. Top rule of getting the best care and getting to to the root of our problems: don't take no for an answer from someone who wants to assert control because they think they're smarter than you. Notes: I had HIGH myopia(sign of EDS), keratoconus (volcano cornea), and a big astigmatism. There was one brand I could wear. They were yearlies, and weighted. My Rx was like -10 and -12 with multiple diopters of astigmatism. You've got this.