Just looking to the experts (you guys) for some info about Hughes.
I'm twenty-one, a student and live in London. Over the last three years I've been getting sicker with various conditions, and have been diagnosed with Ehlers-Danlos Syndrome which is a genetic disorder, nonalcoholic steatohepatitis (liver disease) for which they've found no cause, gastroesophageal reflux disease with vomiting and recurrent kidney stones. I'm due to see a cardiologist because of recurrent headaches, dizziness, trouble concentrating etc this Thursday.
My GP, gastroenterologist and physio wanted me reevaluated by rheumatologist once it became clear I was having multiple parts of my body going wrong and because the good folks at GSTT hospital are super booked up we paid to see Dr Sanna at London Bridge to get some quicker answers.
The thought was that I had something like RA because even though Ehlers-Danlos causes joint pain I was experiencing quite a lot. After the full ten vials of blood however I got a positive Lupus Anticoagulant instead.
Now I'm not sure what this really means. I know I need to be retested in twelve weeks (ten now) but having been getting sicker and sicker and constantly having drs tell me not to worry and then ending up with another chronic condition I want to be informed.
I've had a read of the websites and while I haven't had a clotting episode (just a PE scare last year when I went to A&E with chest pain, that was ruled out with chest xray) I do experience the other symptoms. The problem is that the dr told me those symptoms aren't proven to be related, so I'm not sure what to think. Hence I'm here to ask you all who live with it.
Thanks for your time,