Diagnosed 5 years ago and yet it has barely helped me. They can't seem to understand how it is my joints are hurting me so badly and how often things subluxate, how my gastric system is so messed up with zero ideas as to what and that even I look just fine I am NOT fine.
I feel you. Im thinking about trying prolotherapy. Have you looked into how cervical spinal instability and compression of the vagus nerve and the GI complications that come from that?
I was diagnosed 2 years ago and I was continually push towards taking antipsychotics because my medical insurance specialists wouldn't believe that the pain I was experiencing was "not possible," since I wasn't shrivelled in a corner whimpering constantly ( that happens at most once a week....heh😜). Now where I'm willing to continue to find a different diagnosis but the problem is I will no longer be able to see the specialists who are helping me with my symptoms if I don't have a diagnosis. In all honesty how many people do you know have ALL of their ribs subluxate and dislocate on a daily (sometimes hourly) basis? It sounds made up even to _me_ and I live with it.
Yeah, I know, I even started to wonder if I was just being a little dramatic about it all, but the pain is real, and my doctor was great about it, being very patient with me and sending me for tests that he thought wouldn't find anything, but, lol and behold, it did! We just have to be our own best advocates and hope for the best. And believe me, I have had Dr's day to me, "well if your in such pain why aren't you crying?" I almost slugged him, but that would've just hurt me more than him. So what do we do? We just live with it.
@@elizabethvandeventer5487 My family's motto is actually based upon that idea: When those lie and hate you seek to overwhelm you the best way to spite them is _to trudge._ When you have not even clothes on your back because it was taken away the best thing to do is _to trudge._ When you're lost in the darkness of depression so that none know how to reach you the best thing to do is _to trudge._ Cause at the end of the darkness there is a wonderful place where lies die in the light of truth, where it's known everyone is truly naked and the best revenge is realizing that you don't even remember the names of those who lied about you because they've all fallen into dust while you Carried On. So when there is nothing left to do the only thing to do is _To Trudge._ Trudge on.
Thanks for saving my life Dr.Levy, I have Loeys Dietz syndrome and had an aortic aneurysm in 2008 that reached 5.9 cm and other hospitals missed it in the catscan. #ThankYou
i was diagnosed HSD, and until i saw a pain dr who specialised in EDS and got hEDS diagnose finally.... he said "HSD and EDS under the microscope are identical" so you have EDS, based on everything im seeing and what you told me. I didnt have a perfect 2017 B score, but did show hypermobility in every limb.
Diagnosed 5 years ago (now 41) and yet it has barely helped me. They can't seem to understand how it is my joints are hurting me so badly and how often things subluxate, how my gastric system is so messed up with zero ideas as to what and that even I look just fine I am NOT fine. Getting help with this damn condition is so hard.
I'll say it again, like me, pick yourself up, dust yourself down and try, try, try again. Yes, it is tough when it seems no-one is listening but you've found the right audience so you a re close to the solutions. Are there definitive answers? Pass, no idea, I'm still work in progress and at this moment the muscles in my neck have spasmed again, the pain is incredible and my eye-sight is blurred. Yep, I sit and cry. I howl and I stamp my feet and when I'm done feeling sorry for myself I move on and try, try, try again. You're in your 40s and I'm in my 60s; not much different in our pursuits save the 20 years between us. Good luck.
While I understand that you and society has focused on symptoms and the 2017 paper was focused on that as it related to genetics. ... what happened to the idea that hypermobility it caused by connective tissue disorder? Where is the idea that EDS folks do not produce collagen properly? Connective tissue disorder creates a very different framework for the discussion
Having the first appointment at a hsd| eds specialist in 2 months. After 10 yrs of pain im gonna end my life if I don't get the answer there..Wish me luck
Good luck, I do hope you have a supportive team. Please contact our helpline who can offer support around pain management resources ehlers-danlos.com/eds-helpline
@@TheEhlersDanlosSociety I already did that, thanks. They gave me the appointment in the first place. Waiting for results which should come back negative because I probably have heds | hsd. If these experts won't commit to a diagnosis while I checked every symptom and criteria in your PDF regarding heds.. Well then I would be doomed to pay for my meds for life.. I need the diagnosis for more than my honor. We will see what happens, all I know is that I don't go on without one..
I don’t meet diagnostic criteria for EDS and HSD, so I don’t have any diagnoses.But I tear muscle, ligaments and tendons easily. I have four subluxation.
For the first time, other people are describing MY LIFE. My partner doesn't get it. He's at the the point where if my hip subluxes while walking and I continue to keep moving I MUST be fine.
I think this will set sufferers back significant he appears to be non-empathetic to this complex condition. The insurance companies will also not be willing to fund if all related conditions are discounted.
I wouldn't call him non-empathetic I would say more non-emotive. As to insurance companies not wiling to fund all related conditions, mm, I'm glad I live in the UK where health care covers all investigative and diagnostic care......even if it does take forever to get to the top of the list :-))
Diagnosed 5 years ago and yet it has barely helped me. They can't seem to understand how it is my joints are hurting me so badly and how often things subluxate, how my gastric system is so messed up with zero ideas as to what and that even I look just fine I am NOT fine.
I feel you. Im thinking about trying prolotherapy. Have you looked into how cervical spinal instability and compression of the vagus nerve and the GI complications that come from that?
I was diagnosed 2 years ago and I was continually push towards taking antipsychotics because my medical insurance specialists wouldn't believe that the pain I was experiencing was "not possible," since I wasn't shrivelled in a corner whimpering constantly ( that happens at most once a week....heh😜).
Now where I'm willing to continue to find a different diagnosis but the problem is I will no longer be able to see the specialists who are helping me with my symptoms if I don't have a diagnosis.
In all honesty how many people do you know have ALL of their ribs subluxate and dislocate on a daily (sometimes hourly) basis?
It sounds made up even to _me_ and I live with it.
Yeah, I know, I even started to wonder if I was just being a little dramatic about it all, but the pain is real, and my doctor was great about it, being very patient with me and sending me for tests that he thought wouldn't find anything, but, lol and behold, it did! We just have to be our own best advocates and hope for the best.
And believe me, I have had Dr's day to me, "well if your in such pain why aren't you crying?" I almost slugged him, but that would've just hurt me more than him. So what do we do? We just live with it.
@@elizabethvandeventer5487
My family's motto is actually based upon that idea:
When those lie and hate you seek to overwhelm you the best way to spite them is _to trudge._
When you have not even clothes on your back because it was taken away the best thing to do is _to trudge._
When you're lost in the darkness of depression so that none know how to reach you the best thing to do is _to trudge._
Cause at the end of the darkness there is a wonderful place where lies die in the light of truth, where it's known everyone is truly naked and the best revenge is realizing that you don't even remember the names of those who lied about you because they've all fallen into dust while you Carried On.
So when there is nothing left to do the only thing to do is _To Trudge._
Trudge on.
I like that, thanks for sharing.
Thanks for saving my life Dr.Levy,
I have Loeys Dietz syndrome and had an aortic aneurysm in 2008 that reached 5.9 cm and other hospitals missed it in the catscan.
#ThankYou
i was diagnosed HSD, and until i saw a pain dr who specialised in EDS and got hEDS diagnose finally.... he said "HSD and EDS under the microscope are identical" so you have EDS, based on everything im seeing and what you told me. I didnt have a perfect 2017 B score, but did show hypermobility in every limb.
Thank you for this great presentation. It was perfect for me and my current diagnosis of HSD.
Diagnosed 5 years ago (now 41) and yet it has barely helped me. They can't seem to understand how it is my joints are hurting me so badly and how often things subluxate, how my gastric system is so messed up with zero ideas as to what and that even I look just fine I am NOT fine. Getting help with this damn condition is so hard.
I'll say it again, like me, pick yourself up, dust yourself down and try, try, try again. Yes, it is tough when it seems no-one is listening but you've found the right audience so you a re close to the solutions. Are there definitive answers? Pass, no idea, I'm still work in progress and at this moment the muscles in my neck have spasmed again, the pain is incredible and my eye-sight is blurred. Yep, I sit and cry. I howl and I stamp my feet and when I'm done feeling sorry for myself I move on and try, try, try again. You're in your 40s and I'm in my 60s; not much different in our pursuits save the 20 years between us. Good luck.
Totally understand
I look fine too and I have a whole family of medical professionals but no one understands this -
While I understand that you and society has focused on symptoms and the 2017 paper was focused on that as it related to genetics. ... what happened to the idea that hypermobility it caused by connective tissue disorder? Where is the idea that EDS folks do not produce collagen properly? Connective tissue disorder creates a very different framework for the discussion
Having the first appointment at a hsd| eds specialist in 2 months. After 10 yrs of pain im gonna end my life if I don't get the answer there..Wish me luck
Good luck, I do hope you have a supportive team. Please contact our helpline who can offer support around pain management resources ehlers-danlos.com/eds-helpline
@@TheEhlersDanlosSociety I already did that, thanks. They gave me the appointment in the first place. Waiting for results which should come back negative because I probably have heds | hsd. If these experts won't commit to a diagnosis while I checked every symptom and criteria in your PDF regarding heds.. Well then I would be doomed to pay for my meds for life.. I need the diagnosis for more than my honor. We will see what happens, all I know is that I don't go on without one..
@Andethidial bubabibub are you OK?
@@andethidialbubabibub3261 how are you now
I don’t meet diagnostic criteria for EDS and HSD, so I don’t have any diagnoses.But I tear muscle, ligaments and tendons easily. I have four subluxation.
HEDS nicely put...Thank You
Twenty five years before being diagnosed.
For the first time, other people are describing MY LIFE. My partner doesn't get it. He's at the the point where if my hip subluxes while walking and I continue to keep moving I MUST be fine.
I think this will set sufferers back significant he appears to be non-empathetic to this complex condition. The insurance companies will also not be willing to fund if all related conditions are discounted.
I wouldn't call him non-empathetic I would say more non-emotive. As to insurance companies not wiling to fund all related conditions, mm, I'm glad I live in the UK where health care covers all investigative and diagnostic care......even if it does take forever to get to the top of the list :-))
@@jobell7356 that's if drs transfer you
Helpful
So who knows correct diagnosis.my.rhumotoligist didn't no between hsd or eds
Warning no genetics