"Lack of specialist support"

I was diagnosed with POTs a few years ago and it’s further complicated with low blood pressure. I have been under the care of Dr Miller for some time now. Dr Miller has always given me timely, high quality, patient centred care. Her wealth of knowledge and understanding is high for a condition that is still being researched. 

Living with this condition is debilitating. It’s not well understood by other health care professionals. A prime example of this is, since the time I’ve been diagnosed, I’ve attended the GP surgery because of exacerbation which tends to cause an elevated heart rate. I’ve been diagnosed on these occasions with anxiety. I’ve actually had to give the GPs information on POTs.

I don’t want anyone else to go through what I’ve had to with other healthcare professionals, having to explain POT’s when they try to diagnose you with anxiety. I feel that there is specialist nurses for CFS/ME, MS etc but there is no support other than the Cardiologists for POTs patients.

I would like the opportunity to tell my full story and the fears I have in relation to no specialist support (other than cardiologists) for POTs patients.