But...what to do if you cannot get help from Mayo Clinic?

I followed the suggestions from some in this forum and contacted Mayo to be able to explain my wife's case. First of all, after completing a long form, it took more than TWO long weeks before I was able to have a telephone meeting with someone who, supposedly, was going to listen to her case and suggest how to best proceed.

I never knew if Mayo read my explanations about my wife's issues as contained in the form. The person I talked with just limited herself to suggest to see a Cardiologist. I asked her why not, instead, a Pulmonologist or an Internal Medicine doctor? I further asked why she was suggesting a Cardiologist when not even her story and much less her medical records had been reviewed? No answer from her side.

I explained to her that all tests (and they are endless) ran to this date and ordered by her Primary Care Physician, Pulmonologists (2), Cardiologist (2), Gastro doctors (2) , Allergy doctor and Pain doctor, show no positive results which could have helped to determine the cause of her shortness of breath.

I tried to explain that our aspiration was that, perhaps, her case was thoroughly evaluated by an Internal Medicine doctor who would work with a multidisciplinary group of doctors able to evaluate, as a group, her case. She did not appear to understand that that approach could be possible but after a lot of explanations from my side, finally, she suggested that I could fax her records to the Cardiology Department for a "Courtesy Evaluation".

I am now trying to get SHANDS (UF Hospital) in Gainesville, FL to share her records with Mayo in Jacksonville. Yet, numerous questions still remain. Perhaps the most relevant one is if there will be a thorough evaluation of the results given the fact that this will be merely a "courtesy revision" as it was explained to me.

Very discouraging and that, frankly, is an understatement.