Being recently diagnosed with EDS Type III has been great as many things do add up. However, I feel slightly left to it now, and more questions are popping up. Over the weekend I experience extreme pins and needles from my hips downwards, after reading online it can occur with HEDS however, I just wanted to double check. But I didn't know who to go to as my GP knows very little about the condition and have subsequently been discharged from Genetics (at SCH), just wondering who people go to answer their questions, that have been brought up since diagnosis/discharge.
Thanks in advance