My EDS Diagnosis Storyš©āš¦½(Ehlers Danlos Syndrome). How I was Diagnosed with Ehlers Danlos Syndrome
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Published 2023-05-19
Symptom and Diagnosis Story Playlist: Ā Ā Ā ā¢Ā SymptomĀ &Ā DiagnosisĀ StoryĀ videosĀ Ā
My Symptoms of EDS (Ehlers Danlos Syndrome):
EDS Playlist: Ā Ā Ā ā¢Ā Ehlers-DanlosĀ SyndromeĀ (EDS)Ā Ā
How I was diagnosed with CCI: Ā Ā Ā ā¢Ā HowĀ IĀ wasĀ DiagnosedĀ withĀ CCIĀ &Ā AAIĀ (C...Ā Ā
Symptoms of CCI:
How I was diagnosed with MALS: Ā Ā Ā ā¢Ā MyĀ MALSĀ diagnosisĀ storyĀ (MedianĀ Arcua...Ā Ā
Symptoms of MALS: Ā Ā Ā ā¢Ā MYĀ MALSĀ SYMPTOMSĀ (MedianĀ ArcuateĀ Liga...Ā Ā
Q&A Did EDS and MALS affect me during childhood (conversation with my mum): Ā Ā Ā ā¢Ā Q&A:Ā DidĀ EDSĀ &Ā MALSĀ affectĀ meĀ duringĀ ...Ā Ā
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Some Info about my Symptoms/Conditions and Diagnosis stories:
š©āš¦½My EDS Diagnosis Story:
š©āāļø Symptom Videos: Ā Ā Ā ā¢Ā SymptomĀ VidoesĀ Ā
š¦Medical Road Trip Series: Ā Ā Ā ā¢Ā MedicalĀ RoadĀ TripĀ SeriesĀ Ā
š¦Ehlers Danlos Syndrome (EDS) Playlist: Ā Ā Ā ā¢Ā Ehlers-DanlosĀ SyndromeĀ (EDS)Ā Ā
āļøAppointment and Testing Vlogs: Ā Ā Ā ā¢Ā AppointmentsĀ andĀ TestingĀ VlogsĀ Ā
š¦CCI and AAI Playlist: Ā Ā Ā ā¢Ā CCIĀ &Ā AAIĀ (CraniocervialĀ InstabilityĀ ...Ā ā¦
š¤¢MALS playlist: Ā Ā Ā ā¢Ā MALSĀ Ā (MedianĀ ArcuateĀ LigamentĀ Syndrome)Ā Ā
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šPOTS playlist: Ā Ā Ā ā¢Ā PosturalĀ OrthostaticĀ TachycardiaĀ Synd...Ā Ā
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All Comments (9)
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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 aloneā¤
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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 crohnās i would understand because my Mum has it, but I have symptoms of fibromyalgia and the flexibility has always been there for me. Iāve experienced having trouble to sit because Iām 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. Iāve always been active, a high achiever too, but I know that we have potential we just canāt 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 Iām going to find the answer. Iām 46. Thanks for giving people hope who perhaps are suffering this and are still looking for answers.
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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.
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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.
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Thank you so much for this video Mel. Please stay strong and keep fighting through all the challenges <3
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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 š following and looking forward to watching more of your videos :)
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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
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Very sorry to hear that you were Diagnosed with Ehlers Danlos Syndrome. Good luck ā¤āš©¹ā¤āš©¹š
