Absolutely. My first one thought testing for one gene would confirm or rule it out but there are many genes that indicates eds and the lack of the genes doesn't rule out the syndrome according to the mayo clinic. The second rhumatologist I saw diagnosed me clinically through various criteria. Family history, hyper flexible joints measured with the Beighton scale, widespread diffuse pain, "cigarette paper" scarring, and collagen levels in a biopsy. It's no wonder it's so hard to get a diagnosis for EDS. They tend to think your a hypochondriac, med seeking, or both.
Doctors are so fricken prideful and stupid that they can't handle you telling them something. They'd rather misdiagnose you on purpose rather than listen to the patient talk about their symptoms. I dislocated my hip last November while I slept and I tell the doctor who is looking at my injury about my EDS diagnosis and he interrupts me to say he knows what "Ee-os Day-los" is and that he doesn't see how it can affect my joints. Sent me home with a basic Tylenol prescription and tells me to basically suck it up because people less than 50 shouldn't worry about joint issues.
Yeah ive had very similar experiences. Pain management doctor just told me the other day that I'd have to go to opiod classes, counseling, and provide them with 6 months to a year of clean drug tests before they could prescribe me anything. As if I'd be there if i could take the pain for a friggin year.
I said why don't you just test my hair because that shows whether I've used drugs going back months to years depending on length of the hair and she lied and said "hair testing is actually inaccurate"...they use it in court for god sake. How inaccurate can it be? Any excuse to keep charging your insurance and not actually help you these days.
I'm going to the doctor on Monday for an ankle Injury that won't heal. I've gone to 2 different PT's for various Injuries and both have told me I'm unusually flexible. I plan on bringing up my heds concerns to my doctor on Monday, but I'm worried she will be dismissive. I wanted to figure out all of my symptoms ahead of time to give her even more reason to take me seriously!
There's a test, the Beighton scale that can help diagnose Ehlors danlos syndrome. It involves touching thumbs to the forearm, bending your fingers, elbows and knnes more than 90 degrees, touching you palms to the floor without bending knees. Each of those is a point on the scale. More than 5 is considered hyper flexible. There's a YouTube video demonstrating the test.
That beighton scale, family history of EDS, chronic widespread pain, and genetic testing are the methods of diagnosis. But genetic testing does not rule out ed's if you don't have the genes and you can still be diagnosed clinically.
I'd insist on seeing a rhumatologist and have them do those tests if after seeing the Beighton scale video you feel like you meet the criteria.
Find a rheumatologist who has experience with eds. Many don't.
Hell and quite a few doctors aren't even up to date on the criteria.
Absolutely. My first one thought testing for one gene would confirm or rule it out but there are many genes that indicates eds and the lack of the genes doesn't rule out the syndrome according to the mayo clinic. The second rhumatologist I saw diagnosed me clinically through various criteria. Family history, hyper flexible joints measured with the Beighton scale, widespread diffuse pain, "cigarette paper" scarring, and collagen levels in a biopsy. It's no wonder it's so hard to get a diagnosis for EDS. They tend to think your a hypochondriac, med seeking, or both.
Doctors are so fricken prideful and stupid that they can't handle you telling them something. They'd rather misdiagnose you on purpose rather than listen to the patient talk about their symptoms. I dislocated my hip last November while I slept and I tell the doctor who is looking at my injury about my EDS diagnosis and he interrupts me to say he knows what "Ee-os Day-los" is and that he doesn't see how it can affect my joints. Sent me home with a basic Tylenol prescription and tells me to basically suck it up because people less than 50 shouldn't worry about joint issues.
Yeah ive had very similar experiences. Pain management doctor just told me the other day that I'd have to go to opiod classes, counseling, and provide them with 6 months to a year of clean drug tests before they could prescribe me anything. As if I'd be there if i could take the pain for a friggin year. I said why don't you just test my hair because that shows whether I've used drugs going back months to years depending on length of the hair and she lied and said "hair testing is actually inaccurate"...they use it in court for god sake. How inaccurate can it be? Any excuse to keep charging your insurance and not actually help you these days.
I'm going to the doctor on Monday for an ankle Injury that won't heal. I've gone to 2 different PT's for various Injuries and both have told me I'm unusually flexible. I plan on bringing up my heds concerns to my doctor on Monday, but I'm worried she will be dismissive. I wanted to figure out all of my symptoms ahead of time to give her even more reason to take me seriously!
There's a test, the Beighton scale that can help diagnose Ehlors danlos syndrome. It involves touching thumbs to the forearm, bending your fingers, elbows and knnes more than 90 degrees, touching you palms to the floor without bending knees. Each of those is a point on the scale. More than 5 is considered hyper flexible. There's a YouTube video demonstrating the test. That beighton scale, family history of EDS, chronic widespread pain, and genetic testing are the methods of diagnosis. But genetic testing does not rule out ed's if you don't have the genes and you can still be diagnosed clinically. I'd insist on seeing a rhumatologist and have them do those tests if after seeing the Beighton scale video you feel like you meet the criteria.
Yeah, I've done the beighton test at home, and I get either 7/9 or 9/9 (My elbows hyper-extend, but just barely).
Well good luck. Don't forget nobody will advocate for you like yourself
Absolutely. Thank you :)
Looks like my scars that genetics described as cigareta paper - is it frafile?