It’s so annoying that so many medicals have seen my joints are hypermobile( going beyond normal range of motion). Don’t have to be unstable, greatly flexible, experiencing subluxation or dislocation’s. There should be much for awareness amongst the medical community since it’s such a neglected under diagnosed disorder. Once the diagnosis is made it helps the direction of managing symptoms/conditions.
I finally got my diagnosis this year at 41. I’ve had this issue since I was ten. It’s heartbreaking that so many go undiagnosed, because I can tell you from experience, this condition is painful!
I was a dancer for years and could do things no other dancer could do. But, by my 20s my tendons would suddenly snap and by my 30s I had bone on bone arthritis in both knees. Then came severe gut pain at age 40, with simultaneous projectile vomiting and explosive diarrhea which caused severe anxiety. I had doctors come to my hospital room and tell me that there were "other patients with real diseases like diabetes." Until my wbc count was 33,000 57% eosinophils. I moved to Texas for my arthritis and found better pain management and understanding of EDS from UT Med School Clinics. You may be better off if you can see a geneticist usually at a children's hospital or GI. Ortho and rheumatology are useless.
I am confident i have H.E.D.S but my doctor keeps wanting tests for random things and wont accept i know my body ,currently testing to see if all my "gut issues " are caused by a long standing infection 🤦♀️ been getting these gut issues since i was a young child so i doubt it is going to be caused by a infection but i will do all these tests if that is what is needed. I am Also diagnosed with hypermobility with a score of 9/9, i also get extreme dizziness and sometimes pass out but the doctor is saying that is because i have a b12 and vitamin D deficiency (from poor absorption due to the gut issues) so it wasn't until 2019 when i went to see the specialists at the hospital and got the hypermobility diagnosis that everything clicked together like a perfect puzzle that finally had all the pieces. Now is the problem of trying to convince my doctor to look at the individual problems as a whole complete problem instead, any help from anyone currently going through diagnosis process or already diagnosed would be massively appreciated. P.s sorry for the long comment and thank you to anyone that made it to the end ❤ i will try to answer any questions and clear anything up if needed in the comments ❤
I am well into my 70’s and finally have a diagnosis of Hyper Mobility. Is it possible that esophageal spasms are a part of this?? As well, I have developed a Lazy Tongue (tongue now touches a small part of the roof of my mouth). All my life I could NOT find a medical professional who would look at my WHOLE Body issues!! Very frustrating. Looking forward to a reply
@@centerforcomplexneurology Have you thought of setting up in Canada? I know an EDS charity that may help with it all, the ILC foundation for Ehlers Danlos, I would avoid the main EDS site as things haven't changed there in decades for patients around the world. God Bless
It’s so annoying that so many medicals have seen my joints are hypermobile( going beyond normal range of motion). Don’t have to be unstable, greatly flexible, experiencing subluxation or dislocation’s. There should be much for awareness amongst the medical community since it’s such a neglected under diagnosed disorder. Once the diagnosis is made it helps the direction of managing symptoms/conditions.
Same
I finally got my diagnosis this year at 41. I’ve had this issue since I was ten. It’s heartbreaking that so many go undiagnosed, because I can tell you from experience, this condition is painful!
Almost age 68 for me.
I was a dancer for years and could do things no other dancer could do. But, by my 20s my tendons would suddenly snap and by my 30s I had bone on bone arthritis in both knees. Then came severe gut pain at age 40, with simultaneous projectile vomiting and explosive diarrhea which caused severe anxiety. I had doctors come to my hospital room and tell me that there were "other patients with real diseases like diabetes." Until my wbc count was 33,000 57% eosinophils. I moved to Texas for my arthritis and found better pain management and understanding of EDS from UT Med School Clinics. You may be better off if you can see a geneticist usually at a children's hospital or GI. Ortho and rheumatology are useless.
My mom just got diagnosed with it today June 29th 2020
I am confident i have H.E.D.S but my doctor keeps wanting tests for random things and wont accept i know my body ,currently testing to see if all my "gut issues " are caused by a long standing infection 🤦♀️ been getting these gut issues since i was a young child so i doubt it is going to be caused by a infection but i will do all these tests if that is what is needed. I am Also diagnosed with hypermobility with a score of 9/9, i also get extreme dizziness and sometimes pass out but the doctor is saying that is because i have a b12 and vitamin D deficiency (from poor absorption due to the gut issues) so it wasn't until 2019 when i went to see the specialists at the hospital and got the hypermobility diagnosis that everything clicked together like a perfect puzzle that finally had all the pieces. Now is the problem of trying to convince my doctor to look at the individual problems as a whole complete problem instead, any help from anyone currently going through diagnosis process or already diagnosed would be massively appreciated. P.s sorry for the long comment and thank you to anyone that made it to the end ❤ i will try to answer any questions and clear anything up if needed in the comments ❤
Love this. Thank you
You're welcome!
I am well into my 70’s and finally have a diagnosis of Hyper Mobility. Is it possible that esophageal spasms are a part of this?? As well, I have developed a Lazy Tongue (tongue now touches a small part of the roof of my mouth). All my life I could NOT find a medical professional who would look at my WHOLE Body issues!! Very frustrating. Looking forward to a reply
Is this clinic in Canada?
No, we are located in Phoenix, Arizona.
I'm looking for something in Canada too
@@assacam5747 have you been diagnosed? what do you need right now
God Bless
@@centerforcomplexneurology Have you thought of setting up in Canada?
I know an EDS charity that may help with it all, the ILC foundation for Ehlers Danlos, I would avoid the main EDS site as things haven't changed there in decades for patients around the world.
God Bless
In Canada you want the Good Hope Clinic at UHN in Toronto
I am hypermobile
🦓