HI Charlie,
thank u for responding. is all your b12 and blood work normal now? and are you any better? I am not familiar with gluten free diet, but I will try it, as if I can get the b12 down. My current doctor is a NUero at Mayo, and I must say he has been the only doctor I have seen since I got ill in 2005, that I feel is knowledable in pots/dys, none of the other doctors/cardio, neurosurgeon, pcp, oncol, endo, etc even mentioned oi/pots.dys or testing for it! and I referred myself to Mayo this past aug, as I was completely desperate, feeling this is my last chance to get answers and treatment plan and attempt to be well, and I had googled my symptoms and dysautonomia/pots had come up. So, I thought, maybe this is what I have! My cardio doc, who I was seeing in Aug told me NO she would NOT refer me to Mayo! even tho she kept telling me I was fine,(she just did the ekg, echo and treadmill for 6 min on me) I told her NO, that adrenaline keeps releasing in my body and I could feel it when it happened! the surges and anxiety,stress and panic! I was convinced it was dys/pots, anyway, she said NO to referring me, and I actually had to threaten to go to the Med
Board, so, she finally sent the referral form to Mayo. I had tried to get into Mayo by myself, self refer, and they said NO, had to be doctor refered! The Mayo doc, did tell me to drink water, up my salt, compress stockings, start little exercise 4min day, all helping a bit. but still cant control the adrenaline coming out in stress, surprise situations, loud noise, bright lights set it off, like being startled. I cant control it, taking a flexeril helps a bit, by making me sleepy and knocking me out. I have NO idea how to do the gluten free, but if it helps I will do it. are you still on it forever? thank you so much for giving me the info. I have not had a normal life since 2005 and I want to get to be as better quality , back to as much normal life I had, if I can.