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Victoria

Dismissed As A Patient Again

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My internist just phoned to tell me he is dismissing me as a patient because my symptoms are too complex for him. I asked if it was something I'd done and he said no. He's referring me to the University of Iowa, but I haven't had any luck with them in the past in regards to my POTS symptoms. I feel like I've been kicked while I'm down (again) with the two skin cancer diagnoses I received yesterday. This is dismissal number 6 for me, I think. I don't know how much more I can take.

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Maybe focus on the skin cancer and take a little time to regroup and think about what to do for the autonomic issues?

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Hugs ... Have you seen an integrative doctor yet ? They're the best kind of doctor for handling complicated cases because they're trained in traditional and holistic medicine. Just google integrative doctor in your area ... tc .. dizzy

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When I saw the word "dismissed" in your title I automatically assumed you had been disregarded/minimized, not literally "dismissed." I think it's actually good that your Dr. recognizes that your situation is out of his league. I think it's worse when they pretend to know everything, yet offer no real help. I know how incredibly frustrating it is to try and try to get help and keep running into brick walls. Is there someplace other than the University of Iowa for you to go? Maybe you can explain to your Internist that they have not been able to help and he can refer you someplace else. Is it possible for you to travel somewhere where the Dr's might have more expertise?

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It makes you feel like you're some sort of plague rat, doesn't it? I call myself the hot potato patient; I think I behave myself, but I have run into that kind of attitude as well (although nobody has been rude and dismissive enough to actually fire me as a patient, they just act like such jerks that there's no point). Doctors really don't want to deal with our level of complexity, and they have trouble tolerating the ambiguity and strangeness of our symtoms. My only advice is to keep trying - I have had to do most of my learning and treatment planning myself, with the help of people like those here. Don't give up. Doctors shouldn't be able to take the easy way out like that - it's far from good medicine. And it's hard to keep fighting after so many years of illness; try to rest and then get back on the horse and try again. Sorry this happened to you.

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I understand your frustration, I have never been dismissed as a patient from a doctor but I've dismissed myself many many times like (31) . The doctors I have seen pretty much just complicate everything and cause me more emotional stress because of incompetence, remaining arrogant just because the M.D status.

So I think its good your doctor realized he couldn't handle your case and referred you else-where.

I would also handle the skin cancer issues 1st.

The autonomic issues in my case have been many years and sometimes I take breaks for months about pursuing it unless it was a immediate threatening issue, and coming here actually helps me work through alot of my symptoms just knowing most of the (crazy,spontaneous) symptoms come and go and don't need immediate treatment.

Anyway best wishes to you and maybe you'll get more answers with the next doctor you see.

Lissy

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first and foremost, i'm sorry that you're feeling so overwhelmed at the moment, and quite understandably. my following comments are not in any way intended to minimize that you certainly have a lot on your plate.

i do have some thoughts - and quite a bit of experience - with part of what you're dealing with. some others who have commented have equated/ compared a literal dismissal/ refusal to treat by a physician to the type of dismissive attitude many of us have encountered re: certain symptoms, etc. over the years. while neither is enjoyable, i would argue strongly that they are not on the same continuum at all. being "blown off", not believed, having symptoms minimized, & whatever else can go along with the horrific dismissive attitudes many (or most) of us have encountered to at least some extent in our journey with dysautonomia is, in my opinion, inexcusable & unprofessional...amongst other things.

on the other hand, i have actually come to realize that a physician who will not treat someone is actually - at least on some level - making a responsible decision that, in the end, is the best thing for both him/ her and for said patient. i know that it doesn't always feel that way in the moment, particularly when you need a doctor and you've already called or interviewed more than you can count, but in the end it means that you won't be being cared for by a physician who really isn't best-equipped to care for - and work with - you to help you reach the best level of health you can possibly have. similarly i never fault a doctor for saying "i don't know". frustrating as it is, having experienced doctors who have too much ego to utter those words & instead treat me incorrectly (knowingly so) &/or decide that anything they don't know must somehow be my fault or a psych issue, i actually give a good deal of credit to those who are self-assured enough to say "i don't know". ideally s/he will then be willing to help you find answers &/or help you connect with others better suited to help you seek those answers, but in reality that's simply not always that case and ultimately it's better to find that out sooner rather than later. in a way someone saying they can't take you on (or continue to keep you on) as a patient is acknowledging the ultimate "i don't know." is it ideal? of course not. is there at times a component of the doctor simply not being willing to take someone on who will take more time/ energy/ effort? definitely. and perhaps most unfortunately, is it often done poorly, particularly if you are already an established patient and/or are in the midst of health issue that needs attention rather expediently? very much so. and yet in the end it's best for all. and when done "well"/ responsibly/ for the right reasons, i.e. b/c s/he truly doesn't feel equipped to properly be your health care provider/ partner is (in my opinion) one of the most humble things a doctor can do.

again i do NOT want to minimize how rotten it can be in the moment. it can't help but feel personal (even if/ when you objectively know otherwise) and can put you in a tough spot re: ongoing health management. i truly have "been there, done that" and it never feels good. i've been 400 miles away from my long-standing health care team (having just moved), unable to find a primary care doc willing to take me on for months with significant health deterioration occuring which forced me to use clinics &/or the ER for things i (quite knowingly) should have been going to my PCP for. in that instance i never did find a PCP willing to work with me until, during a several-week hospitalization, a nurse practitioner took finding me a doc on as her personal project, and even then it took her several weeks. most recently/currently one of the two major hospitals where i live has informed me that they are not equipped to care for me, aka i need to go somewhere else. the physician team who had cared for me - and quite literally saved me life - there several times informed me of this "development" via my current primary care doc (who is, thankfully, amazing) but it definitely jarred me, particularly when i was first told. ultimately, however, do i want to be at a hospital that doesn't feel able to care for me? no. so in the end i give them credit for being humble enough to acknowledge that reality. i could go on but there's no need. i just wanted to illustrate that my thoughts are not without "getting" it on a very personal/ experiential level.

my heart goes out to you and i hope that you soon find the doctor who can best care for & partner with you moving forward.

hugs,

B) melissa

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You poor thing! I was dismissed by my doctor, but that humiliating and frustrating experience led to me becoming a more informed patient who is MUCH better about advocating for myself. My current PCP is awesome, but after my last doctor "fired" me, I was so determined not to go through that again that I thoroughly interviewed the leading candidates I had in mind. I spoke with their office staff, asking about the availability of appointments, notification of lab results, etc. I asked the doctors if they were willing to be filter through which all of my prescriptions and orders are viewed through. I made sure she could handle working with a team of specialists, because I see several, none of which talk to each other! My MD "interviews" took some time and effort, but getting a feel for their policies, philosophies, and practices BEFORE I became their (angry) patient saved us all a lot of grief. I would ask their office staff most of my questions to weed out the easy "no's", and then scheduled an office visit to "interview" my top candidates. A little upfront effort on my part saved me countless grief down the road...

Sandy

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(((((((((((((Victoria)))))))))))))))))))))

I am so sorry your doc gave up. I have tenuous relationships with my docs as well. My GP has told me multiple times that I am "over his head" with all my stuff, but he has tried very hard to get me to specialists who have a little more knowledge than he does. He will NOT treat my POTS stuff, he relies on the specialists for that, he see me only for "normal" stuff like sinus infections, flu or torn ligaments. :( We both have a complete understanding that "normal" stuff is the only thing I see him for. That being said, since he is my primary, he takes all my crazy labs and test results and keeps and reviews them, but he doesn't even pretend to understand all of it. I hope you find a good POTS doc so that you don't have to rely on a GP for all your stuff!

I second Sandy's interview opinion. I found my GP through an "interview" process, and he agreed to take me on if I liked/trusted him. Of course we both had the above understanding that he would only treat "normal" stuff.

Edited by firewatcher

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I read every word each of you wrote — thank you from the bottom of my heart. I understand why he dismissed me, and you're right, he is doing me a great service by bowing out. He is a physician I will never forget and will always have great respect for. He didn't have an ego and he didn't try to play "god" with his patients like the others I'd hired in the past. His own father has kidney failure and he won't even let him be a patient in his practice because his father's health issues are too complex. Dr. S is a real humanoid and I understand he did me a favor by cutting me loose. Nonetheless, it stings to be pushed away, knowing I'm starting from scratch yet again. But I know I can do this. Finally, I know for certain I'm on the right path with Hyperadrenergic POTS and I've made enormous strides in just a few days with Claritin, Benadryl and Ranitidine. You are an awesome caring group of people and I don't know what I'd do without you.

With heartfelt thanks,

Victoria

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My internist just phoned to tell me he is dismissing me as a patient because my symptoms are too complex for him. I asked if it was something I'd done and he said no. He's referring me to the University of Iowa, but I haven't had any luck with them in the past in regards to my POTS symptoms. I feel like I've been kicked while I'm down (again) with the two skin cancer diagnoses I received yesterday. This is dismissal number 6 for me, I think. I don't know how much more I can take.

Aww...I'm sorry this happened. You aren't alone with this experience - it's happened to me - and sometimes I've jumped ship when I sensed that being fired by my doctor was imminent - but with a bit of a tenacity I accepted it as part of the program in choosing my best doctor..

It's so much a part of the experience of folks with POTS and other rarer disorders there are people that write articles to try to help - this link is for articles from the EDNF website ~

http://www.ednf.org/index.php?option=com_content&task=view&id=1442&Itemid=88888976

If it's any consolation at all - even when you do find a fabulous doctor - the nature of dysautonomia treatment paths seems to be one of frequent trial and error .... and referrals to others etc... lots of 'errors' can be disheartening as well...

Since EDS'ers have POTS often enough - maybe you could call one of their offices for a suggestion for a doctor - Dr. Lavallee is in South Bend IN - maybe they could steer you to a good POTS doctor --

Pray you get an ideal team in place - be well.... one day at a time ok?

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