My advice is to find a doctor who will treat the symptoms.

You try a medication (usually one of the anti-seizure drugs) until 1) the discomfort is reduced and 2) you can tolerate the medication.

My brilliant Immunologist says: "We use the tests we HAVE, not the tests we NEED." The tests we have don't always tell the entire story, of course. WE know that all too well.

I know I have dysautonomia without POTS since I have Sjogren's symptoms which are the results of attacks on my autonomic nervous system.

Doctors simply don't know everything and good ones will be the first to agree.

Bad ones will send us away since they want 'round patient pegs' to slide easily into their 'round diagnosis and treatment holes'. After all the round patients walk away with a diagnosis and treatment in the allotted time. We 'different shaped patients' are just taking up lots of unreimbursed time!

And we are not all square pegs: we are star shaped, and triangles, and so many other shapes....which is why we don't have easy diagnosis and treatment.

We can't change the medical profession. We have to keep trying doctors until we find ones that will use some intuition and trust to help us find relief and validation.

Hugs, ElaineD