houswoea Posted September 15, 2010 Report Share Posted September 15, 2010 Well, I got no new information on the pots stuff at mayo... but it's okay! I know they tried their best. I did find out that I have TB antibodies so I have to take the medicine for the next nine months. This means I need to find a primary care person at my school because I have to go back to them for the refill every month to make sure my liver doesn't explode and stuff like that.But how in the heavens am I going to explain all this stuff? I feel like I need a very experienced doctor who is prepared to handle my five zillion medical problems. I don't even know how to start the process, but can anyone give me some advice about this?Like, do I really need to find one who knows what pots is? Or should I make sure this doctor knows what he/she will be dealing with before I pick her/him? Or do I just randomly pick someone at a clinic I trust?Thanks friends! Elizabeth Quote Link to comment Share on other sites More sharing options...
comfortzone Posted September 15, 2010 Report Share Posted September 15, 2010 Well, I got no new information on the pots stuff at mayo... but it's okay! I know they tried their best. I did find out that I have TB antibodies so I have to take the medicine for the next nine months. This means I need to find a primary care person at my school because I have to go back to them for the refill every month to make sure my liver doesn't explode and stuff like that.But how in the heavens am I going to explain all this stuff? I feel like I need a very experienced doctor who is prepared to handle my five zillion medical problems. I don't even know how to start the process, but can anyone give me some advice about this?Like, do I really need to find one who knows what pots is? Or should I make sure this doctor knows what he/she will be dealing with before I pick her/him? Or do I just randomly pick someone at a clinic I trust?Thanks friends! ElizabethWow - good luck with that one - I will be moving to a new city and getting a primary is a daunting task. Until I started thinking about it. In actuality if they have a problem with things POTS related or EDS related or whatever it all is - then it truly is THEIR problem and not yours. You will find yourself most likely in any situation - good clinician or lousy clinician - to be more informed and intelligent to speak with on many issues than they are equipped to deal with.It's a blessing and a curse I guess. For one thing your education brings you strength and conviction to live your best life possible. You know you are a special case so to speak - and that is no longer a surprise. You've waded through those waters and now you need to persevere to wellness the best you can and NOT get discouraged - or do not stay there if it does happen (as we know it can).It takes a bit more 'people skills' and strength to go to a doctor than most of the population. You don't feel so well and then are at risk for being misunderstood, labeled, misdiagnosed, glossed over and the rest of it.... Yet we KNOW this ahead of time.... So what to do to remain strong remains the question....Well personally I made an appt. with a colleague of a primary mentioned by a member here whom her son sees. The recommended doctor is not taking new patients - so it's a 'risk' - yes -- but heck - it always is to some degree. Some personalities just don't click. Some interactions are bad. On the other hand you just may find a gem. It remains to be seen -- so go ahead and make an appt. with the suggestions people offer here - and know that if it's a bad fit -- well then it's a pain in the rear sure - but truly it's nothing more than a bad fit. And you try another one.If you know a nurse or physical therapist or lab person or anyone that works at a local hospital it is good to tap them for info on who is known to be a very good physician. You can always be tricky and talk with volunteers, HR departments - heck you can sleuth to the best of your abilities if you have the energy and something may pay off.If the doc you choose does seem overwhelmed you might point that out to them tactfully and ask they refer you to the appropriate physician for your multiple areas of health concern... Nurses are a great resource so check with them if you can somehow.What I have done to be helpful is keep 'the black binder' of all my medical records....under tabs in many sections for the consults, diagnostics, therapies and treatments, CD's and such for MRI's etc... That way I can reference anything done recently for the doctor to read. I received the paperwork for my new primary care today and you have to tell them a lot of stuff on that - whether they read it or not is questionable. But it does take time to fill it out and you can stress what your major concerns are and what they will be. It's part of building your team -- so you can go into the future well cared for and getting stronger everyday - inside and out. Good luck again! Quote Link to comment Share on other sites More sharing options...
firewatcher Posted September 15, 2010 Report Share Posted September 15, 2010 I totally second the "Big, Black Binder O' Medical Records!" I would first ask the physicians that you are seeing now if they know of someone that they would recommend. (MDs can be a tight "clique" and know someone everywhere.) Next, I'd call your insurance, usually they have a nurse/care line for medical questions and mine actually did a pretty extensive search and found two docs who know about POTS. You could call the medical university that is closest to your new destination and start there. Lastly, you could look on a website like healthgrades.com or vitals.com and search for someone with a good review.The tricky part is when you get to the "seeing them" phase. I found my new GP by asking for a new patient interview, to see if we could WORK TOGETHER. If the doc poo-poos you or questions your diagnosis, say thank you and move on. You will find someone open minded and willing to work with your past docs eventually. My current doc was not POTS literate (but is now) but had been through Mayo, so he knew these rare conditions were not that rare. He has been great, he works with my other docs well and has been completely honest with me. If there is an issue that he can't handle he will find someone who can, that is more important than a complete understanding of POTS.Good luck, I hate going to new docs, but sometimes it works out really well. Quote Link to comment Share on other sites More sharing options...
lissy Posted September 15, 2010 Report Share Posted September 15, 2010 After being a patient of 20 something doctors I found that it is a good idea to have consultations with perspective doctors so you know right off if they can meet your needs and if they are even comfortable handling so many issues. It saves time and unnecessary energy to have to do the doctor hop and I have found if you have a doctor that cannot meet your needs you will know from the conversation.Best of luck Lissy Quote Link to comment Share on other sites More sharing options...
comfortzone Posted September 15, 2010 Report Share Posted September 15, 2010 After being a patient of 20 something doctors I found that it is a good idea to have consultations with perspective doctors so you know right off if they can meet your needs and if they are even comfortable handling so many issues. It saves time and unnecessary energy to have to do the doctor hop and I have found if you have a doctor that cannot meet your needs you will know from the conversation.Best of luck LissyHi Lissy --By consultations...do you mean just a 'first appt.' time where you know in the back of your mind you are interviewing the new doc for the job? Or is there actually a certain way to arrange the appt. with an office and the office's billing - so that you are going for a 'consult' --- even if it's a primary ... where it might be coded differently and hence charged differently that a new patient visit?I guess with my twice a month appt's with my primary here in CA - I never actually got billed for an official "physical" this year. So for my getting established with a new doctor it will be billed as a Yearly Physical when I have my first appt.If I change my mind and go with the Mayo Clinic system - while I have some good insurance they suggested I make my appt. using the 'annual physical' as the reason - and then I will be accepted into the practice. After that when my insurance switches to Medicare - they cannot turn me away for that....whereas they will not even give appt.s out to people with Medicare upfront. Six of one half dozen of the other I guess - but there is not any huge love for the Mayo primary care situation I've read....my only reason for entertaining that was that the primary would have easy access to all my records there and easy access to excellent referal docs...thanx! Quote Link to comment Share on other sites More sharing options...
houswoea Posted September 16, 2010 Author Report Share Posted September 16, 2010 I am wondering this too... it seems like you only get one shot with the yearly physical thing... Quote Link to comment Share on other sites More sharing options...
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