Hi all - I have Sjogren's and connective tissue disease, but over the past year I have been in excruciating pain and been to the GP and physio, and from what I've read here and what my physio indicates, I think I may have EDS (I know I am hypermobile). I have my annual appointment with my rheumatologist at Kings in London next week and I want to go armed with all the info I can for a proper diagnoses or referral to a specialist. Incidentally, I have had a few cardiac issues lately, and the GP did a 24 hour monitor, which said I had some ectopic beats. They waved me off saying that I should "watch it", but from reading here it seems that this, too could be related to EDS.
My question is, it seems that the key is to get a hypermobility specialist to see you, as not all rheumatologists know about this so much. From what I can see on the EDS support website, and the HMSA website, the only places with NHS hypermobility clinics in London are UCL on Euston Road, Stanmore Royal National Orthopedic (which is not taking on new patients), and London Northwest Healthcare. Does anyone know of any different ones, or are these the ones I should mention to the doctor? I live in Surrey, but can travel to any London location.
Thanks so much, this forum is very helpful.