Karin, I find quite often that hospitals have gone to hospitalists and so our own Dr's no longer have access to us in the hospital. Its very frustrating as they don't know us and don't research us either and try to change what works for us when we don't have a other health issues. It sounds like you trust your PCP and your PH Dr at the mayo clinic. I'd stick with them, take what the hospital Dr said with a grain of salt and follow up with your drs. Good luck, sending prayers

Health care is a co operative occupation. That co operation HAS to include everyone and YOU TOO. Step one is to get the PCP/primary care physician you can work with. One that is at least so knowledgeable to know that THEY DO NOT KNOW EVERYTHING. I trust one that will flat out tell you this rather than keep those who are guess-makers. This is going to be your orchestra leader. LET THEM KNOW this is what you are expecting out of them. If they don't want the job, that's ok. Band leader is not a job for everyone. Tell them you respect them for being honest, but for YOUR HEALTH this is what you need and feel comfortable with as an approach to the business of your health management. Once that is squared away, add on the next members of your team/band. You seem to enjoyed the treatment you did get from the specialist, so if you can see who they would rather be on the team with, it may be a better way to get everyone you need to participate in the system. This challenge is team work, you have to be able to advocate for yourself, and for the sake of your health present as a patient the best possible YOU you can present. Be a person THEY can work with, and not against you. If you are just going to nod your head and let things happen to and with you without any understanding, you may as well be a lab rat: DON'T, it is not a way to make real progress or get the best out of health care. Keep notes. ask questions, really know what is happening. You may have to explain it to strangers so do your homework. We can all be smart cookies if we are willing to get hot and stand in the kitchen. For that you do not have to hold a doctorate, just assemble a team.

Interesting about it being Group 1. The good thing there is that Group 1 does have a lot of medicinal approaches that can be pursued.

Keep us posted.

Thanks @A myPHteam Member, thank you, this is useful information. I did not think of that. Problem is, when I have TIA symptoms (like I did when the doctor first saw me), my brain slows down. It's hard to describe, but it's like I suddenly have the brain of a 2nd grader - so I pass the "normal" tests for cognitive, but I know it's a huge difference. I can eventually figure out we're in May if they ask - so I pass, but the fact that I have to think about it for a while is not normal... So a question about the validity of my diagnosis and care when I am in this state is just too hard for me to deal with. So I just say ok. The next day I was "back" and could explain better and push back... but did not think about asking her to phone Mayo. I asked her to please to talk my PCP as she fully understands my case (and she is also a professor in internal medicine at USF, so she really has authority to speak about my case). I don't know if she did, but the final decision was to keep me on my meds. But I find it extremely challenging to deal with this especially when it is unexpected, I go to hospital for acute problem and then suddenly have to explain why I am diagnosed ...and I suddenly have to give reasons, labs etc etc... I will do that next time. I think I will ask each doctor treating each thing to give me a letter about my diagnosis and their phone number and then if anyone questions again ask them to read the letter and call the specialist or my pcp.

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A myPHtea...

Karin, that sounds like a horrible hospital experience, Im so sorry 😞. Its aweful what some places have become. I do hope you get the best Drs in your area and get the treatment that works best for you.