What Mayo Clinic Is Better For Diagnosing The Cause Of Pots/oi?

[Gemma]

Hi all. I am just coming from one of the major clinics that deals with POTS patients, but it was such a bad experience. I am only happy I got some testing done, that was already prescheduled by my local cardio doctor. I got nothing out of my appointment with a doctor. All she said that my autonomic test showed negative (i was actually feeling good that day), and that she thinks I do not have anything going on with my autonomic system. She based this dicision on one test and didnt wait until the results for other 3 tests come back. Also, for my chronic dry cough she said to go back to my pulmonologist and let him investigate it. I asked to see pulmonologist at their clinic, but she said no. Also, i mentioned to her my symptoms that could relate to MCAS and asked if i could be tested here or seen by their immunologist but she said no again and said to see a local one, even though I told her there are no local immunologists that deal with MCAS. She didnt even want me to see cardio doctor there for my chest pains. This is so upsetting. I cried so much after my appointment. We drove 15 hours, hubby took 4 days off work, spend over $1000 on a trip and it was so upsetting. I complained to patients relations and also to manager, but no success. Manager said that doctor said at this point just eat salt and drink water and if symptoms progresa come back in a year. Thats is a funny recomendation.

Sorry for the long post, I am just still so upset. So, anyways. Now I am thinking of scheduling appointment at Mayo and wanted to know what location is considered best for diagnosis and also for trying to figure out the reason why we feel this way. I have other things going on like chronic cough that developed right before my POTS symptoms. Also, have everyday musculo chest pains that dont go away and have had them for past 5 month. So, i wanted to know in what clinic you are able to see other doctors, like ednocrinologist, rheumatologist, pulmonologist at the time you visit the clinic besides just POST specialist.

I had a Mayo appointment but in florida, but cancled it because was told that they do not specialize that much in dysautonomia. But i already had all my testing for POTS done here in this other clinic that i visited, would it be beneficial to go to florida or should I go to another location. I do not want to have another bad experience like I just had. Please recomend the clinic and maybe some good doctors so I can ask for them.

Thank you all very much.