looking into getting a diagnosis for eds through nhs

hello, first time posting here. i have suspected ehlers-danlos for over a year now. i’ll be sharing my experiences and why i am questioning eds.

i have always had issues with my joints, whether it be the constant trapped gas in my ankles or the constant osgood-schlatters. last year i was admitted to a&e around three times as i unexplainably had issues with walking. my knees were stuck bent and all the muscles in my legs were completely tense, i was in a lot of pain. all of these times where i went to a&e i had blood tests done, all of my results came back normal. i was discharged with crutches the first time but i still couldn’t walk properly for another two weeks afterwards. this got me thinking what it could possibly be, through lots of research i narrowed it down to non hypermobile ehlers-danlos. it made me realise i had other symptoms that i thought was normal - stretchy skin, bruises easily, painful popping joints, locking knees whilst standing.

i am a young person in the uk and i cannot do much without my mother saying it’s okay. i did mention my symptoms and that i suspect that i have ehlers-danlos. unfortunately my mum was adamant on needing a blood test to determine this despite explaining that it has never showed on these for me. i had a blood test done yesterday and i spoke to a doctor about my symptoms, they suggested i see a rheumatologist to look into this. my mother finally agreed to go through with getting a diagnosis, i am currently waiting for an appointment.

if anyone has any experiences they would like to share regarding their diagnosis process with the nhs, i’d love to hear it! thank you for reading