In 2013 I was diagnosed with PoTs after two years of head scratching by various specialists. Thankfully my neurologist picked up that my heart rate was unusually high for someone on beta blockers. He performed a poor mans TTT and felt there was an issue. After my full TTT and lots of questions about flexibility, it was decided I would need a rheumatologist to assess my condition. PoTs being one of the comorbidities of EDS.
Another year later and in 2014 I got my EDS diagnosis at the Stanmore Hospital, it was a worrying time because then I knew nothing about Ehlers Danlos but overtime I learnt more about how to manage the pain, brace my limbs if they were struggling and just understand fully why my body was struggling, on various levels.
Over the years I have to thank the London NHS hospital’s for the excellent care. Guys and St Thomas’ (dental and ENT) Charing Cross (neurology) Royal London (gastro) Stanmore (rheumatology and shoulder reconstruction) King’s (cardiology)
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Living With Ehlers-Danlos Syndrome Type 3 