Wow, this is GREAT! I never thought I had EDS bc my fingers are not hypermobile, but my knees and elbows hyper-extend & I can put my palms on the floor. Growing up, I always had "knee issues" where my patella would constantly slip out of place. One time while bending backwards, my femur popped out from my pelvis. I constantly would have twisted ankles. My incisions heal very slowly & I have stretchy skin. I always wondered about the bumps on my elbows too. So very interesting...
I am so glad you recommend to leave the stitches in twice as long. I got a hole that could fit a half dollar a week after the stitches were removed at normal time. It is so ugly and was really gross with cleaning. The doctors could not explain why I had a huge hole in the middle of my "what appeared healed" incision.
Most people (not all) with the really rough pain have the hypermobille form, not classic. There are of course exceptions both ways, but I am 54 and have little or no pain. My mom is 77 and has no pain. Cool? Are you having a lot of dislocations or subluxations? I subluxate like crazy, but have learned how to put things back in place (basically). I've never had surgery for a joint, and would be hesitant to do so because I don't heal well. So, expect the best, OK? And thank you, Sweetie.
Only my shoulder dislocates as of now...should I expect more joints to start poping out as i get older? For treating dislocations, are there options other than surgery and pain meds? I have heard of people with EDS having extreme, chronic pain...my pain doesn't seem THAT bad. Should i expect it to get worse w/ age? How do I have you (Dr. Diana) become my doctor because you are one of the only ones I have seen who actually know what they're talking about? :)
I am in my mid 20s and have eds classic type. do you know of any doctors in michigan who know about eds and shoulder dislocations? I've already lost a job because of my eds and am looking for another but probably wont get past the medical screening. How can i get health insurance if no companies who give it will hire me b/c of eds? Does medicare cover people with EDS? what are recommended occupations for people with EDS? Will my EDS get worse with age?
Well, I guess that's a good start! Maybe you can get that monkey off of your back, at least! Were these videos any help for you? Diagnosing classic and hypermobility type is a bit of an art! Hopefully they'll do a skin biopsy and send it to the connective tissue lab in N. Caroline (I think that's where it is). That will help!
We found the only geneticist in southeast Virginia is in Richmond at MCV. The first appointment they have available is 3 months away. Four of us in my family now have an appointment for the same day there. They did say the easiest to diagnose is the vascular form. Now I'm a little nervous that they may not be good if we are not vascular. But actually the evidence points toward vascular for us.
Wow, this is GREAT! I never thought I had EDS bc my fingers are not hypermobile, but my knees and elbows hyper-extend & I can put my palms on the floor. Growing up, I always had "knee issues" where my patella would constantly slip out of place. One time while bending backwards, my femur popped out from my pelvis. I constantly would have twisted ankles. My incisions heal very slowly & I have stretchy skin. I always wondered about the bumps on my elbows too. So very interesting...
2136cass 6 months ago
@2136cass I'm so glad this was helpful for you! I hope it saved you many unnecessary doctor office visits. :)
Big hug,
Dr. Diana
PrettyIll1 6 months ago
Great to know after the fact, right? ;)
BEEN THERE!
Thanks, ricagilmore
PrettyIll1 7 months ago
I am so glad you recommend to leave the stitches in twice as long. I got a hole that could fit a half dollar a week after the stitches were removed at normal time. It is so ugly and was really gross with cleaning. The doctors could not explain why I had a huge hole in the middle of my "what appeared healed" incision.
ricagilmore 7 months ago
Hi Tracy,
Most people (not all) with the really rough pain have the hypermobille form, not classic. There are of course exceptions both ways, but I am 54 and have little or no pain. My mom is 77 and has no pain. Cool? Are you having a lot of dislocations or subluxations? I subluxate like crazy, but have learned how to put things back in place (basically). I've never had surgery for a joint, and would be hesitant to do so because I don't heal well. So, expect the best, OK? And thank you, Sweetie.
PrettyIll1 7 months ago
Only my shoulder dislocates as of now...should I expect more joints to start poping out as i get older? For treating dislocations, are there options other than surgery and pain meds? I have heard of people with EDS having extreme, chronic pain...my pain doesn't seem THAT bad. Should i expect it to get worse w/ age? How do I have you (Dr. Diana) become my doctor because you are one of the only ones I have seen who actually know what they're talking about? :)
tracy2850 7 months ago
I am in my mid 20s and have eds classic type. do you know of any doctors in michigan who know about eds and shoulder dislocations? I've already lost a job because of my eds and am looking for another but probably wont get past the medical screening. How can i get health insurance if no companies who give it will hire me b/c of eds? Does medicare cover people with EDS? what are recommended occupations for people with EDS? Will my EDS get worse with age?
tracy2850 7 months ago
Well, I guess that's a good start! Maybe you can get that monkey off of your back, at least! Were these videos any help for you? Diagnosing classic and hypermobility type is a bit of an art! Hopefully they'll do a skin biopsy and send it to the connective tissue lab in N. Caroline (I think that's where it is). That will help!
Fingers crossed. Big hug...
PrettyIll1 8 months ago
We found the only geneticist in southeast Virginia is in Richmond at MCV. The first appointment they have available is 3 months away. Four of us in my family now have an appointment for the same day there. They did say the easiest to diagnose is the vascular form. Now I'm a little nervous that they may not be good if we are not vascular. But actually the evidence points toward vascular for us.
Thank you,
Deb
ndpioneers 8 months ago
Hi ndpioneers,
A geneticist who is very comfortable with EDS is your best shot. (I'd ask them before making the appt). Some are only good with the vascular form...
Good luck!! :)
PrettyIll1 8 months ago
What is the best type of doctor to see for a diagnosis of EDS?
ndpioneers 8 months ago
I'm so glad you enjoyed it. If you need any help on this journey, please don't hesitate to reach out, OK?
Hugs to you both,
Dr. Diana
PrettyIll1 9 months ago
Thanks for the video, it was very informative. My daughter was actually diagnosed with Ehler-Danlos Classic Form today.
binkle02 9 months ago