Oh thank you for this response and for sharing your situation. It really is reassuring and helpful. I agree with you on needing a plan -this is just not acceptable as is. I absolutely will continue to seek doctors who will evaluate this & treat me for this more appropriately. Can I ask what region of the country you are in? Or how you find someone? I am in the Green Bay Area and have or will consult with Mayo, Marshfield, Cleveland, or Milwaukee .