Angelika_23 Posted April 25, 2009 Report Share Posted April 25, 2009 It seems like I can't have just one doctor. And none of them know each other, so they don't really communicate (except to my PCP who thinks I am mental) about me. Plus, some of them disagree... I saw a rheumatologist who thinks I have fibro, but the neuro doesn't think so... I also see an EP cardio. They all like to change meds every time I visit one. I feel like I am stuck in the middle.How do those of you who see multiple docs deal with this?Angela Quote Link to comment Share on other sites More sharing options...
firewatcher Posted April 25, 2009 Report Share Posted April 25, 2009 I am juggling three endocrinologists, one neurologist, an allergist, a PCP and an OB/GYN. Some agree about some things and some disagree completely. Fortunately, my PCP is willing to be ring-master for this circus and is also willing to act as my "curb." I report to him what each separate doc has said and we discuss whether or not we think it fits for me. Then I act according to what makes my symptoms better. He is willing to say "I don't know" and lets me bring him my research (which he actually reads!) Then we go back and forth again to see if something needs to be tracked down or if it does not fit.Get copies of everything. YOU will be your own physician on this, you have to be. If there is one of your doctors who does not think you are a basket case and is willing to talk you through the medical jargon and physiology, use them and find a new PCP. I'd probably do that anyway. Good luck, it is no fun here under the big top! Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted April 25, 2009 Report Share Posted April 25, 2009 Hi,Answer: Not incredibly well, but it is hard, some could care less what other drs think/do and others are all about working together. Some just don't understand POTS etc., so I get outsourced to their specialty and they have no idea. Best thing is to get copies of all records that take place outside your normal network of drs. and take it with you to every appmt. So, I take everything from Cleveland Clinic and Toledo to all appmts. if they are interested they look at them, and if not they don't. Overall there is decent communication due to most are on the same computer system, and they just pull everything up. Otherwise I have records with me. I can only think of two of my drs. that sound like they have talked to each other about me. Otherwise, it is all from records (letters) and what I tell them. I don't have a good answer I guess, and recently I have somewhat let down my guard or whatever with the assumption that I will have to move soon anyways and have all new drs. So I don't over exert myself bringing everyone up to speed, except on pertinent matters.If they disagree, then you have to kind of look at it like, can I successfully see both? Do I feel that one listened and looked for a reasonable answer better than the other? Could I choose between them? Choose the one you believe is most correct (on the right path towards healing), and seek help from them. Also, it is just a fact that some disciplines or factions of drs DO NOT agree and WILL NEVER agree. This is a version of office politics... When I come across this, I tend to avoid whatever topic that dr. does not agree with, and seek help with other things. If five of your drs. are thinking one way, and it is just against the way one dr was taught and they are not budging, you have to go with the other five, and just nodd your head to the other dr. while actually dealing with it with your other drs. Doesn't mean that the old school dr doesn't know their stuff in another specialty. So, I don't dump them right away.I have a PCP, allergist, endo, cardio (Toledo), 4 neuros (1 in Cleveland), sleep dr, derm, and rhuem. All but two are in same network. Thank goodness!!!I think I am done rambling... Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 25, 2009 Report Share Posted April 25, 2009 doctor juggling i like it. Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted April 25, 2009 Report Share Posted April 25, 2009 Find one that you trust and knows Pots.(not mensa but0 and have them as your go to person. This is so important. If a rheumy told me I have fibro, which btw is encompassed symptom wise in Pots. You have fibro................. Good luck M Quote Link to comment Share on other sites More sharing options...
firewatcher Posted April 25, 2009 Report Share Posted April 25, 2009 At one point I was actively seeing ELEVEN different doctors in three different networks. THAT was juggling, man their egos kept tangling up, and they did communicate between each other somewhat. Once one path dead-ended, the doctor was "dropped," occasionally I have returned to clarify something or the treatment path came back to their specialty. My PCP explained that each doctor has their specialty decided on well into med school, so they concentrate there and only study enough of the other systems to pass the test. As a result, their education is NOT well-rounded and they try to explain every symptom form their specialty's perspective without understanding how the other body systems effect even their own. What we ALL need is a Neuro-Cardio-Endo-Pych-Neph-Allergist! with a double-minor in genetics and sleep disorders. I was surprised that Vanderbilt does not have a Neuroendocrinologist on their team, but then they are hard to find as it is. I have not found one that sees patients yet! Quote Link to comment Share on other sites More sharing options...
janiedelite Posted April 25, 2009 Report Share Posted April 25, 2009 My PCP origianally recognized my symptoms as autonomic dysfunction and has totally supported me throughout at least 8 specialists and a trip to Mayo. I'm sorry your PCP doesn't validate your illness. It must be really hard to get adequate treatment!!! Do you have a specialist who really believes and helps you? Can they recommend a PCP who is more compassionate, maybe even write a brief referral describing your illness/symptoms? Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted April 25, 2009 Report Share Posted April 25, 2009 Firewatcher, A small clarification. While many students in medicine do know which field is for them in the "early years". During residency the required rotations do indeed teach about other diagnoses etc... The point is to find a PCP who knows pots and you. Late. M Quote Link to comment Share on other sites More sharing options...
firewatcher Posted April 25, 2009 Report Share Posted April 25, 2009 Firewatcher, A small clarification. While many students in medicine do know which field is for them in the "early years". During residency the required rotations do indeed teach about other diagnoses etc... The point is to find a PCP who knows pots and you. Late. MI have found very few who remember even the info from their own specialty unless they are in a teaching hospital. In the "public" arena, most doctors see the regular disorders and have forgotten about the other stuff till you bring it up. Even my nephrologist said that he did not remember much about diabetes insipidus and that is FAR into his field since it is directly effecting the kidney and it's function. There are just too many systems and feedback loops to know them all. And Dr. House does not exist! Quote Link to comment Share on other sites More sharing options...
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