"why didn't you think of this" about your doctor hit so hard. Thank you for sharing. I have been on the verge of asking my doctor about EDS (sick for 9 years) and your videos have given me the courage to ask because I have a lot of similar symptoms. Thank you so much, I'm so glad you put yourself out there. You're really helping people.
Im from Denmark, Scandinavia, and have EDS, i have never mett anybody with this condition, and doctors knows nothing. Sending my fellow EDS` a giant hug.. your not alone❤
Mel Bel thank you for sharing your experience with living with EDS undiagnosed for so long. It really has helped me to persevere till I have answers. If I have crohn’s i would understand because my Mum has it, but I have symptoms of fibromyalgia and the flexibility has always been there for me. I’ve experienced having trouble to sit because I’m in pain and feel tired far too often, especially I noticed it occurring after eating and now I feel very sleepy half way through dinner at night. I’ve always been active, a high achiever too, but I know that we have potential we just can’t utilise physically, because of fatigue pain and energy levels but I want you to know that You Mel have helped another Mel to feel like I’m going to find the answer. I’m 46. Thanks for giving people hope who perhaps are suffering this and are still looking for answers.
Thank you for sharing your story. It resonated with me and many of my symptoms. I struggle a lot with nausea. When I was in elementary school, my pediatrician said I didn't have EDS because I didn't have problems with dislocations, but my mother believed he was just too lazy to look into it. I developed POTS over a decade ago and have many autoimmune issues. I'm hoping to get answers and improve my life quality by seeking an EDS evaluation next month.
Thank you 😊 I'm so sorry you're going through this! There is a possibility your mum is right as a lot of EDS patients don't have dislocations. I think there is more being known about EDS now so I hope it helps others get diagnosed sooner and accurately
I try to get up every day, just to walk around, its the best thing for me, i also get a lot of morphine and Fentanyl, but i still have a little bit of Life, as im always telling people about my short comming, they do not get surprised when im not okay, it also took me 6 years to get a diagnose. I was diagnosed in my mid 20` im 50 now, so hang in there.
Sorry you’re having to go through this horrible war! But I’m here fighting it right beside you, I also have EDS. My Neurologist is the one that diagnosed me. I have the Classical type ( cEDS). I’m also Epileptic and so my Neurologist treats me for both.
@@shannongreenwell1278 Thank you so much, I am sorry for the fight you are fighting too, but you're right, we're all in it together :) I am sorry you have Epilepsy as well as cEDS but glad your neurologist can treat both :)
@@iammellbell Thank you 🙏 and yes, it’s wonderful that he is able to do that for me. But I’m not fighting this war alone, there’s many people who are fighting it with me.
@@shannongreenwell1278can I ask how did you get him to diagnose or look for it please ? Having issues with my Rhemy as does not think labels matter a HSD is treated same as ESD so no need for label unless Vascular ..but do have app soon with neurologist,and don't want to rock the boat bashing Rhemy as both work in same clinic and friendly
Amazing, I'm so close to eds diagnosis after similar struggles my whole life. It all finally fits. Also just now realising how likely it is I've got cci after seeing a hypermobility physiotherapy clinic yesterday. Am also aussie 😉 following and looking forward to watching more of your videos :)
I thought there wasn't a gene for hEDS? I don't know. There may be. I have been lied to about my own states genetic test availability. So. It's plausible
I think they say they haven't found the gene for hEDS yet, but they still class it as 'genetic' the research is all very new and different sources will sometimes say different things
"why didn't you think of this" about your doctor hit so hard. Thank you for sharing. I have been on the verge of asking my doctor about EDS (sick for 9 years) and your videos have given me the courage to ask because I have a lot of similar symptoms. Thank you so much, I'm so glad you put yourself out there. You're really helping people.
Thanks so much, I really appreciate the encouragement, I wish you well and hope you get the help you need!
Im from Denmark, Scandinavia, and have EDS, i have never mett anybody with this condition, and doctors knows nothing. Sending my fellow EDS` a giant hug.. your not alone❤
Thank you, hugs right back to you!
Mel Bel thank you for sharing your experience with living with EDS undiagnosed for so long. It really has helped me to persevere till I have answers. If I have crohn’s i would understand because my Mum has it, but I have symptoms of fibromyalgia and the flexibility has always been there for me. I’ve experienced having trouble to sit because I’m in pain and feel tired far too often, especially I noticed it occurring after eating and now I feel very sleepy half way through dinner at night.
I’ve always been active, a high achiever too, but I know that we have potential we just can’t utilise physically, because of fatigue pain and energy levels but I want you to know that You Mel have helped another Mel to feel like I’m going to find the answer. I’m 46.
Thanks for giving people hope who perhaps are suffering this and are still looking for answers.
Awh thank you so much for your encouragement
Thank you for sharing your story. It resonated with me and many of my symptoms. I struggle a lot with nausea. When I was in elementary school, my pediatrician said I didn't have EDS because I didn't have problems with dislocations, but my mother believed he was just too lazy to look into it. I developed POTS over a decade ago and have many autoimmune issues. I'm hoping to get answers and improve my life quality by seeking an EDS evaluation next month.
Thank you 😊 I'm so sorry you're going through this! There is a possibility your mum is right as a lot of EDS patients don't have dislocations. I think there is more being known about EDS now so I hope it helps others get diagnosed sooner and accurately
I try to get up every day, just to walk around, its the best thing for me, i also get a lot of morphine and Fentanyl, but i still have a little bit of Life, as im always telling people about my short comming, they do not get surprised when im not okay, it also took me 6 years to get a diagnose. I was diagnosed in my mid 20` im 50 now, so hang in there.
Thank you so much for this video Mel. Please stay strong and keep fighting through all the challenges
Thank you so, so much! you keep fighting too, I'm cheering for you guys!
Sorry you’re having to go through this horrible war! But I’m here fighting it right beside you, I also have EDS. My Neurologist is the one that diagnosed me. I have the Classical type ( cEDS). I’m also Epileptic and so my Neurologist treats me for both.
@@shannongreenwell1278 Thank you so much, I am sorry for the fight you are fighting too, but you're right, we're all in it together :) I am sorry you have Epilepsy as well as cEDS but glad your neurologist can treat both :)
@@iammellbell Thank you 🙏 and yes, it’s wonderful that he is able to do that for me. But I’m not fighting this war alone, there’s many people who are fighting it with me.
@@shannongreenwell1278can I ask how did you get him to diagnose or look for it please ? Having issues with my Rhemy as does not think labels matter a HSD is treated same as ESD so no need for label unless Vascular ..but do have app soon with neurologist,and don't want to rock the boat bashing Rhemy as both work in same clinic and friendly
Amazing, I'm so close to eds diagnosis after similar struggles my whole life. It all finally fits. Also just now realising how likely it is I've got cci after seeing a hypermobility physiotherapy clinic yesterday. Am also aussie 😉 following and looking forward to watching more of your videos :)
I'm so glad your starting to get answers :)
I thought there wasn't a gene for hEDS? I don't know. There may be. I have been lied to about my own states genetic test availability. So. It's plausible
I think they say they haven't found the gene for hEDS yet, but they still class it as 'genetic' the research is all very new and different sources will sometimes say different things
Very sorry to hear that you were Diagnosed with Ehlers Danlos Syndrome. Good luck ❤🩹❤🩹🙏
Thank you