Doctor Groups with Electronic Records

[WinterSown]

My Cardiologist, EP, and Neuro all work for the same hospital and they can instantly see my records--they all work off the same e-chart. Every single thing is there; all my complaints, my tests and all the different diagnosis and treatment. I visited a new GI doctor yesterday--she also works for the same hospital and has access to all my records as well. This is the first time I've been to a new doctor that I did not have to explain what 'D' is and how I was eventually diagnosed and what is my management. I find visiting a new doctor to be very stressful because they tell me they remember the word dysautonomia from a breakout discussion group in med school, if they know it at all. I didn't have to explain anything to her and all she did was listen and ask a few questions of what I didn't cover--very thorough doctor. And instead of ordering tests she ordered a review of all the tests I've had from other doctors. I instantly liked her. I filled out multiple release sheets and everything will be scanned into my records. When I left she printed out a visit summary with my vitals, my upcoming appointments with her and the other three doctors, it lists my meds, my problems, my everything. I don't want to use the word relaxed, not yet, but having all my specialists working off the same record set has lowered my concerns about having to tell people over and over again what's wrong and then listen to their denial. #win

[Guest KiminOrlando]

It is a double edged sword. If you are labeled a 'hypochondriac' and your problems are 'all in your head' or 'drug seeking', you will NEVER get treated by anybody no matter what you do or say. It only takes one to start that ball rolling.

[WinterSown]

3 minutes ago, KiminOrlando said:

It is a double edged sword. If you are labeled a 'hypochondriac' and your problems are 'all in your head' or 'drug seeking', you will NEVER get treated by anybody no matter what you do or say. It only takes one to start that ball rolling.

I experienced that one other place and it stayed there, but not here. Fortunately, this is the group where the disbelief stopped. I'm very happy with them and they will also be going over the testing from that other place and that will end that--the other place will get the report to add to my file. The first time I met the cardiologist I came in two weeks early for my appointment--he took me, broke his lunch to see me right away. I was totally befuddled. They've been in the loop on my dysautonomia advocacy work since the beginning. I keep gaining confidence with them every time I go.

[Guest KiminOrlando]

You are very lucky. I couldn't get diagnosed locally because it was 'all in my head'. It didn't matter what doctor I went to on my insurance. They were all linked through the hospital. It was horrendous. I just kept getting referred to a psychologist - even after fainting on a TTT in the doctor's office. 'You obviously want to be sick or you would get on that treadmill and be better by now.' The gastro told me that obviously I wasn't vomiting like I said I was or I would be skinny. NEWSFLASH! Not everyone with gastroparesis is skinny!

I'm terrified I will get in a car crash and have to be treated by them. I just keep bringing them my files from my out of state doctors for documentation. 

[WinterSown]

14 hours ago, KiminOrlando said:

You are very lucky. I couldn't get diagnosed locally because it was 'all in my head'. It didn't matter what doctor I went to on my insurance. They were all linked through the hospital. It was horrendous. I just kept getting referred to a psychologist - even after fainting on a TTT in the doctor's office. 'You obviously want to be sick or you would get on that treadmill and be better by now.' The gastro told me that obviously I wasn't vomiting like I said I was or I would be skinny. NEWSFLASH! Not everyone with gastroparesis is skinny!

I'm terrified I will get in a car crash and have to be treated by them. I just keep bringing them my files from my out of state doctors for documentation. 

I want to tell you that you are not alone, that other people experience what you do, and there is now documentation. DINET's survey from last summer is heavy on personal experiences; there are some very accurate descriptions of what we go through to get a diagnosis. I can suggest to you to read it, then print it and take a yellow highlighter and mark over everything that applies to you. Take it with you to your next appointment to share with one of your disbelievers--it will be a beginning and hopefully your doctors will get their eyes opened. Minimally, by reading through it, you will get validation that what you are experiencing is very real. 

 

[Pistol]

I am a firm believer of bringing your research with you to your appointments. That is how I still treat my docs: anything I feel needs to be checked or addressed and I have to see a doc who is not familiar with POTS - I bring applicable studies or articles with me to the appointment. Although I am very lucky - my PCP was willing to go the road of discovering POTS with me, every step of the way. Today he is the one who oversees ALL of my medical needs - even if I have to see a specialist for something, HE is the one who pulls the strings and lets the MD's know what I have and need. My local hospital even developed a careplan designed by me and my PCP to instruct other docs what to do because I often was dismissed by ER docs when I needed IV's for POTS but they did not understand why and sent me home. Today I have a plan-of-care attached to my record that instructs other docs about my medical needs and it is so much easier for everybody. I no longer have to try to explain or justify why I need help - it is no longer up to each individual MD's opinion. Unfortunately there is not yet a standard-of-care (like for other chronic illnesses) for POTS that automatically instructs docs on what tests, meds or treatments to use for an individual diagnosis ( i.e. asthma, COPD, CHF etc. ). So they can do as they please and if they feel you are making it up or have anxiety or seek attention - well then they can just send you home. Syncope, tachycardia, most POTS symptoms are not life-threatening, so they can just pass the buck. It is up to US to stand up for ourselves - it is wrong but it is what it is. Just keep looking for informed and understanding docs ( and when you find one please refer them to this forum to be added to the list.) 

[bunny]

On 5/3/2018 at 11:26 AM, Pistol said:

I am a firm believer of bringing your research with you to your appointments.

THIS!  I also bring copies of any relevant labs/tests/notes with me.   I've just found it easier this way.  My last GP was very good about this and we also had 2 separate files, the official, and the one I kept with me.   The official one contained a lot less information in it than the unofficial one.