I’ve recently joined and looking forward to exploring all the classes and getting to know people. I’m based in SE England. I saw a local rheumatologist who diagnosed me with hypermobility and he thought it may be hEDS so referred me on to a specialist in London. I’ve just been to see her and have come away feeling rather deflated. She said I have historical hypermobility (which makes it sounds like it’s in the past and all fine now) and that I need to to see a physiotherapist who specialises in hypermobility and the various specialists (urology, gynaecology, gastroenterology, cardiology, orthopaedics) individually as and when. I’m currently seeing all of them but I was hoping for a more joined up approach. The gastroenterologist and dietician I’ve seen didn’t seem to know much about the condition. I feel from my symptoms that I also have POTs and MCAS. The rheumatologist said I’ve just got to drink more water and take more salt for the POTS and that MCAS was very controversial as a diagnosis and there are no specialists currently here who diagnose it. How have people in the UK got their MCAS diagnosis? I’ve spent years going backwards and forwards to various specialists and not getting any answers, I was hoping for a bit more from the appointment today. I just want to feel better and to be able to function more than I currently do. I’ve got an arthroscopy for a repairs of a labral tear of my hip due for this Friday and she said to avoid surgery so now I’m completely thrown and don’t know whether to go ahead with it. Has anyone had success with this type of surgery?

Posted by Deleted (9211b91a) at 2023-03-27 19:04:48 UTC