Please keep me in your thoughts and prayers today. I see my new neurologist, who is supposed to take over long term care of my symptoms. I am hoping she is open to discussing EDS and POTS, or at least making a referral to someone who is. I feel like no matter how much I prepare it's hard to organize my questions, concerns and thoughts into something succinct enough for one appointment.
I'll be praying for a good visit and an understanding doctor!
She made some changes to the medication regime the NS had recommended. I told her I wanted to be tested for EDS and POTS. She said I didn't have the symptoms of POTS (I was unhappy with that since she didn't ask any questions, just evaluated based on what I had said) but did offer to refer me to a rheumatologist who could diagnose EDS. So I'll start there. Thank you for asking and thanks for the prayers!