Realistic Expectations Of Our Doctors

[firewatcher]

I have been thinking ever since my appointment with my neurologist. He stated that the face of healthcare is changing and that there are now two types of patients: the old-school, trust the doctor and just do what they say type and the new, internet-savvy self-diagnosing patient. Obviously both types have drawbacks.

Just how much should we expect our "regular" doctors to understand or investigate? Should we expect them to read articles on dysautonomia either that we send them or should they look it up themselves? They see many, many patients with many, many disorders, they cannot be experts in everything. He expressed frustration with the type 2 patient always asking for tests and blamed it (in part) for the rising cost of healthcare. I refuse to offer my blind trust to any doctor. If they will not speak WITH me about my medical concerns, there is no way they can help me, especially if I think that they have less knowledge than I have gathered from reputable medical sources.

What should we truly expect of those who are not Autonomic experts, other than listening skills and their knowledge of how their specialty relates to this disorder?

[tinkerbella]

Good Guestions firewatcher: BEAR WITH ME, MIGRAINE ON BOARD!

How much should we expect? In my opinion and with my own PC I think she she looked at me as an ongoing learning expernience over the the years. Althought it took over15 years with her to find my dx., she never dissmissed me or ever made me feel liike like any of this was in my head. In fact it was her who insisted that when a blood pressure med made me so sick, and she apoliged for having not noticed the signs sooner that I was having a allergic reaction and sent me to a ICU plummy care doc. who found out I did not have asthma and then sent me to a cardio who, my PC was about to sent me to for the same tests. When POTS was dx.

Then, when I saw her next I told her that the other person whe kept comparing me to in her practice, to have them have a TTT test. She did and that person had Pots. Next visits she told me she had dx. 3 more and had hired a new med/sed with POTS and was learing everything she could. I'm blessed in fact when I read something here she'll say let's try it or test for it. she is the most wonderful woman doctor I have ever met. she always books long appointments with me.....She's more llike an old fashioned type of doc where she gets to know the whole person.

She always tells me I'm her judge of meds, docs, hospitals as she trusts my opinion. If I don't like the way someone handle me then she won't use the again.

I believe she wants to learn everything she can about all her patients, and the that is how she continues to learn though each and every one of usl Pots isn't the only thing she hs to learn about all the time. But she is learning when she knew nothing at first.

My cardio, is open to everything and I'm very lucky that is handels Pots. Not many do in my local area...So, I was really blessed the day I met him... I tell him something and he says send me the article as I want it and I'd like it for my patients for a hand out. I want to start a support group and he's looking into it. He' told me that I've his most challenging case and this week as he's on vacation his partner told me the same and she is just as wonderful. so He sends me into the city to be fine tunned by the neuro/pots spec. to learn ever more and for my continued care and to make sure that I'm not progressing further in my dysautonomia an many parts of my body are out of control... which he also has me going to many other doctors each area that is not functioning correctly...

as you all know this is a full time job. Although, my case is a challenge to him he has never found a vascular case like mine. His office, although I'm hard work I'm a teaching tool to them also....

My neuro, is well know and knows I'm not an easy case. She along with my cardio spend long visits with me, emails, phone calls . She allows me to email in before I arrive with a list of questions of what is going on and what I may have learned here. then we go the list them one by one after a completer physical exam is done. If some one has told me about a virus related to to EB vrius we do it. If I'm sleeping with my dog and my joint pain is worse we run all the tests lyme and rocky mountain fever, If i have any concerens they address it and that is what I expect and my cardio expect.

He sent me somewhere else in the city first somewhere where he thought for sure they would write a medical journal on me. this doc just through his hands up at me...... was not warm and fuzzy.....he spent 5 mins with me....I would not go back.....I like warm and fuzzy, along with smart.... we said bye, bye.... I'll just write my own book.....

So in a nut shell, I expect all my caretakers to be warm and fuzzy, caring, understanding, super smart, but willing to learn when they don't I leave, I also need the following, kind enought to teach me when I'm having a hard day understanding, want to learn about new things I find online, realize that I'm really sick, but but alive with dreams of being well again, care for me unconditionally on good days and bad...and that I have 2 hearts one real one and another that feels what people say when they think I can't hear them, that is kind loving, and giving to others, that loves, laughs, and cries, that inside my heart lives a younger, stronger me begging to be set free again, and my doctors have seen all these sides of me....

So if they weren't who they are, I wouldn't have left them as I'm don't settle for anything less.

God Bless My Doctors each and every one.

Blessings,

BellaMia~

[juliegee]

Good question, Jennifer. I think we all struggle with this one. In my case, I DID print out stuff for my PCP BUT I'm fairly certain that he never read it. At one point (as I was headed to Brigham & Women's) I asked for a copy of my medical file to take with me and I briefly glanced at it. At some point, my PCP DXed me with some autonomic disorder I had never heard of. My husband and I looked it up and saw that I should have already been dead ".....once DXed patients rarely live beyond 6 months." At that point, I realized I was basically "doctorless" on the front lines.

My PCP has hospitalized me many times (for various things) and appropriately tossed me over to various specialists in the hospital. Despite a HUGE practice, he popped in every morning around 5:30AM to check on me. When I got the MCAD DX, he said "Well that explains a lot- it actually makes sense." I don't think he knows much (if anything) about it but he's got plenty of literature in my file if he's ever bored and needs some light reading material.

I guess my relationship with him is love/hate (not quite that strong on either side.) I get the feeling that he believes me and respects me. That's big. He doesn't know much about my conditions (that's disappointing), but he's ruled out a lot of stuff over the years. Now that my son is 16 y/o, he's thinking about leaving his pediatrician. He wants to go to my doctor. He made the comment recently "If I go to Dr. Fred maybe he'll understand you better too." Hmmmmm.

I'm lucky in that I have a really good local allergist/immunoligist. He basically manages my health care. Now that I've discovered my mast cells are mediating so much of my autonomic/immune stuff, I rely on him alot and have NOT been disappointed. He worked at Mayo in MN for years. So in the absence of a knowledgeable PCP, I feel blessed to have him.

I'm definately in your 2nd category myself, BUT I've learned not to tell any doctor what I suspect. I do the research, DX myself , then get to a specialist who can formally put it together. Sad.....but so many docs operate on an ego level and feel threatened by knowledgeable patients. I laugh when I hear TV docs warn us not to DX ourselves, but to leave the dirty work to the "big boys and girls" who've been to medical school. Neither my son nor I have had any luck in seeking a DX from the docs on the frontline...ie "regular doctors." With chronically ill patients, having so many different specialists who do not communicate with one another nor with the patients' PCP; it is more important than ever to be a knowledgeable patient, ready to advocate for yourself.

Julie

[Sophia3]

Great questions with layers or complexities and versions for an answer. I will try to make mine as short as possible.

Internet is a double edged sword..but I always researched stuff long before the Internet. Nuturional books, vegetarian books, raw foods, etc. Used to get the CFIDS Chronicle in U.S. mail, researched books, etc. So I rarely went to doctors except when I had too and once I got sick...I considered myself enlightened, not self dx. I also grew up with a mom who worked at a hospital and my sister married a doc/surgeon when I was 8. So we knew hospitals were only places to be if you had to be there and even then PROCEED with caution. Now of course quality care is much worse but I digress!

When my CFS doc of many years (always understanding but stopped "investigating") never listened when i said "I feel better when I lie down". I did not even know what that meant but it was baffling!

...then I saw an episode of DATELINE and Dysautonomia which was ME!! and found the NDRF site (this is when it was really good and well monitored!, had TONS of diet info and interviews with doctors)

I was fortunate enough to have online/phone friends send me articles on POTS from other doctors.

Well, my CFS doc dismissed TTT so I made the decision to change doctors. I had learned about Dysautonomia, had medical articles and power of knowledge on my side. One doc he suggested I choose from was a dead end.

This doc, not good. Rushed me into hospital with problems HE FOUND on ekg in office--he said it was emergency!!~~, then week later at follow up, said my problems might possibly b helped by therapy. *&^% Then I did a letter writing campaign to doctors from yellow pages and one that worked with my brother in law (who was retired with health issues of his own) I summed up my 8 year history in one page, it took several weeks but I got a call from a few offices. One doc thought I needed to see an endocrinologist, called me after getting my letter and spent 30 minutes on the phone with me. He was my little angel (but also knew my brother-in-law so we had a personal connection) He gave me 2 endocrinologists names NOW one treats my ANS issues.

He got on my first visit something was wrong with a poor man's TTT. (you can't FAKE that) Had I tried to stick with the jerk doctor who thought I could benefit from "therapy", I would be in a rocking chair in a mental ward.

I think even a good doctor can get lazy on our same complaints so a fresh pair of eyes and another brain is always good.

We are limited by choices some have in HMO's or if just on Medicare, like I am, & Soc sec.financial limitations.

My current doctor is not threatened by things I read or find on the net as I have detailed reasons why I think it might apply to me.

but on the other hand, for other docs, I know it can be annoying to have stuff from any old website taken to them.

There is a line where we have to learn to advocate for ourselves without burning bridges, or insulting doctors. And or do that tap dance around EGOS of doctors. So discernment in dealing with docs is helpful. A sense of humor or asking the doctor to "humor me" has been done a couple times over the years but usually he ALWAYS agreed for a test after hearing my reasons. (I always take NOTES to appts)

That jerk doctor that made me stay hooked up to monitors for 24 hours, barely let me out of bed to to to the bathroom, paid for a bad CT scan (it did not show my brain clearly due to tremors I could not control and CT did not function properly for all my scands. Duh) ordered some ultrasound tests (that did find some MVP insuffiency that we NO KNOW can be part of ANS stuff but not the cause)

and then said I might be fixed by shrink therapy...He did get a scathing letter from me after that fact asking him to explain his answers & reasoning after "HE panicked" in his office and made me go STRAIGHT to the hospital to check in. He never answered me. BAD sign especially in this litiguous age we live in but I let him go and the anger. I also knew I could CHOOSE not to return to him since I had only seen him once before hospital and once after wards. Things get more delicate if one has seen a doctor for a while and gets a sudden change of attitude from a doctor. My CFS was still kind & gentle but NOT OPEN to a TTT.

So, sometimes we have to go with our gut, what insurance will allow, our limited funds..and a doctor OPEN to fix things for individuals..and not just throw meds we don't needs in a one size fits all manner or say to "relax and take it easy".

No easy way to answer your post w/o it turning into a long manifesto!

[erik]

The old adage "Expect the best, plan for the worst" seems to apply. A doc can become an impediment and a patient needs to be ready for that. At the same time, a patient should approach with some optimistic attitude and openness to the doc, since that can help recruit positive participation from your PCP.

I think that a PCP can most realistically be expected to:

a) measure & document medical signs of orthostatic intolerance (supine/sitting/standing bp & hr measures)

counsel the patient on blood volume/hydration techniques, anxiety avoidance & relief, diet tricks... ideally they would have some "literature" in regards to orthostatic issues (though that's tough since much is research or ad-hoc)

c) make good investigation of conditions to be differentiated from autonomic dysfunction (simple dehydration, simple deconditioning, overt Addisons, etc.)

d) consider "first-line" meds such as fludrocortisone, beta blockers, etc. (while investigating and considering contraindications)

e) be quick to refer to specialist... cardio, neuro (of course a GE or other if symptoms steer that way)

f) perform their duty of assessing psychiatric state with tact (avoiding aggravation of a condition exacerbated by stress)

[iheartcats]

Having had to switch doctors recently - and in the process losing my wonderful EP who still answers emails during my transition and my kind PCP - this is a lot to think about.

My new PCP I've only seen a couple times so I can't say how it'll go. He didn't want to give me refills at first for the meds that are working, but when I told him I cannot function and have to continue he wrote them out.

I think he really wants to push me off onto the specialist, and I'm seeing him this week about the flu shot season and a visit to a rheumy (he brought up he knows a good one in case I need it). And I do. I've recently noticed a couple new symptoms the Rheumy I used to see said to watch for so I think it's fair to bring this up with him.

If he reads the POTS stuff I bring? I have no clue. I'm taking a few print outs regarding the symptoms I'm having (my Rheumy even put in the med records he gave me a brochure/literature so again I think that's fair) but who knows if this PCP will see it that way.

He is constantly pushing exercise and reconditioning. I do what I can. He also doesn't get the recent 20 pound weight gain I had in 3 months when I've been stable for SIX YEARS. (I think it's either the BB or Mirena, but he doesn't like to blame meds). I can tell he's into working out, which I wouldn't mind as much if I felt better. I walk, do housework, laundry, etc. That's pretty good for POTS.

I also don't think he gets that I just feel BAD and FATIGUED.

I still can't tell if my print outs drive him insane or not.

[Sophia3]

I just want to say as a person who was formally overweight my entire life (yo yo dieter) until I figured out what worked for me 20 years ago or so, I am one who has lost weight and kept it off with POTS due to fatigue issues and never "feeling hunger pains" anymore. Doctors really are more prejudiced to women when we are over weight and that stinks. YES weight is important, and exercise even ...if we have to do it lying down...we may feel lousy after doing it but it's good for bones and circulation.

But to PUSH exercise as the fix is tough to take. ..YES it can help but can also trigger symptoms and for those of you that FAINT?? it triggers black outs...so that's a tough one.

Not to get off track but even old friends that do NOT get my illness to the degree I wish they did..DO know something is wrong with Sophia as she was always heavier and fought her weight. Friends that last saw me over 20 years ago (RARE to get out much but they are shocked I am thin) Shame they don't believe us when we are overweight and sick but seen as lazy. I am very lethargic not lazy but if heavy, i am sure I would be labled as that by folks that don't get this illness...a couple of distant family members.

and for those who get accused of Anorexia..it's a problem,too.

Imagine starting a new doctor with either being too thin/and or overweight AND need open mindedness to one's treatment for Dysautonomia...unless you have good documentation..that adds a boomerang to this situation. Also many docs just sent tests/reports and not their personal notes...this can be a good thing as sometimes personal notes add insults (what they say behind one's back) but in other ways their personal notes are validating & can help other doctors understand. with HIPAA I am not sure what thats' done to the personal notes of drs aspect. after all their personal notes are either REALITY or FANTASY depending on how UNDERSTANDING the doctor is.

Thus the complications in what to expect out of our doctor...knowing when to ask/demand things, when to change doctors or see if there is a compromise to clashes in philosophy when you are stuck with a doctor until you find a new one.

[vemee]

I have had several doctors that did not like the fact that I researched the internet yet they were not willing to do the research themselves. Doctors are under pressure to make money and that's ok but the downside is that in order to make money they have to see a lot of patients in a day and try not to spend more that 10 minutes with them. Patient's like us take more time and are less profitable to them. You also get into the ego thing when you do your own research, some doctors don't like the idea of a patient knowing more than they do so they dismiss what the patient is showing them. Another problem we have is if it can't be found with the initial set of vitals and cbc blood test an illness doesn't exist. I heard one doctor on "Medical Mysteries" say that there is a problem with doctor education in that if they come across a condition they don't recognize they write it off as mental problems.

That being said there are good doctors out there who will take there time and listen and will seek an answer to our problems, it is just unfortunate that some have to go through the bad to get to the good. If I did not find pots place I would never had known what I had or where to go for treatment. I would have been fired from my job, not retired, for anxiety and be stuck trying to do an unskilled labor job that I physically could not do and would probably been fired from that for under performance. We have to be our own advocate and if a doctor isn't taking our symptoms seriously then we need to change doctors. We should be tactful when asking if we need to be tested for something and realize the doctor may have seen the condition we think we have and can judge better by experience than we can by our research if we should be tested. I know I have asked for unneeded tests before but I have also asked for tests that showed I had a problem with something. I have been sitting up too long so I am rambling but before I end this I want to emphasize that Doctors don't know everything and often don't have time to research a patient's condition so we need to step in and help them where they are deficient.

[EarthMother]

there are now two types of patients: the old-school, trust the doctor and just do what they say type and the new, internet-savvy self-diagnosing patient.

No way! He actually said that and went on to blame rising healthcare costs on unnecessary testing prompted by educated patients!! {gentle hugs} How you sat there without crying in shear frustration is beyond me. I am not surprised he omitted all the pharmaceutical ads on TV that insist we go to our Doctor and get a presciption! Because these are no doubt the "easy" patients in his opinion, that he can medicate and send home.

You deserve better. Please know that. You may have to settle while you are searching for your dream team ... but don't give up the vision that it DOES exist.

As you know, my Doctor listens to my opinions, reviews new material I may bring in right there with me (i highlight to make it quick) and has actually phoned researchers before on my behalf. When I had that wicked weird rash last summer ... I had googled it up and down and pretty much knew it was pityriasis roscea before I saw my PCP. I didn't say anything to him though because I really just wanted an "unbiased" read of my blotches. When he said "pityriasis", I smiled in relief. As he started explaining it to me ... I added what tidbits I had learned on the net. My husband remarked "She already googled it." And the Doctor tells both of us, "That's good. There is a lot of good information on the internet."

Each of us deserve a Doctor who can say the words ...

There is a lot of good information on the internet!

And if you find yourself sitting in an office with a luddite ... have deep compassion for them, they are obviously lost in their own egoic fears. Forgive them, they know not what they do.

And keep the vision that your next Doctor will welcome your brilliance, see your case file as a challenge they want to take on, champion your medical options and help you blaze the healing path as an advocate as well as expert you can trust.

Holding the vision ... because I know it gets heavy to carry sometimes.

~EM

[bjt22]

Well, a recent study showed that by simply apologizing, doctors were significantly less likely to be sued...so a humble attitude makes excellent economic sense for doctors...forget the "it's the "new age" patient who are driving up our cost" argument.

This is very timely. I'm that patient who does her own research, and usually manages to diagnose herself as well as request what should be the appropriate treatment. All in all, I'm fairly all right with this, as long as I have doctors who will work with me on this level. This is the way I am, and while at times, I might bemoan the fact that I have "to it all myself", I know that in the end, I'm personally not happy with anything less.

Now, that all said, this week I've been going through a dilemma with my PCP. He's been our family doctor for 20 years. I like him, he's a great guy, and while he readily admits that his knowledge about my condition is almost zero, he was the guy who sent me on to the appropriate specialist 14 years ago that allowed me to get a diagnosis in a matter of weeks verses the years I've heard it took others. He's never doubted me when I've told him something was wrong...he just sends me to whatever specialist he thinks will help. However, like all of us, he's not getting any younger. In the past couple of years, I've noticed that he's slowed down considerably. I guess that's what working 18 hour days for years on end will do to a person. Anyway, with my sudden hearing loss, he's stuck on the idea that I had a stroke, and couldn't even manage to get my testing orders correct and I've waited over two weeks to get the most basic of testing to rule this out. I'm frustrated, to say the least. I've been seeing his PA, and I really, really like him....he's a younger guy, really on the ball, and very, very interested in learning. Guess I should have asked for him this time.

So, I guess what I'm saying is that while I'm disappointed with my doctor's behavior in this particular incident, I don't feel quite right in totally "throwing him under the bus" for this one incident. He's been great in the past, and I like his PA and will probably work with him more. And you know, this is all because I've had such a favorable opinion of him...he doesn't know it all, doesn't pretend to know it all, and for a patient like me, with my temperment, this is a fairly good match. Maybe more doctors should adopt a more humble attitude.

[janiedelite]

I don't think it was right of your neurologist to categorize patients into "compliant" and "trouble-makers" based on whether we question the his course of treatment. He'd probably love my grandparents, who smile and nod at the doctor's advice then go home and do as they please. We are at least trying to work in partnership with our physicians, and if they are afraid of being partners with us, we should be afraid of them!!!

I started seeing my PCP before I got sick, so she saw the progression and knew something was wrong. Last summer, she said she would keep sending me to specialists, to Vandy, Mayo or wherever I needed to go to get answers. She really was my lifeline of hope last summer.

She was the one to first suggest dysautonomia, sent me to many other specialists, but I was the one to bring up my symptoms. She never discounted me, and I've read all of her notes and she always pictured me on paper as a very rational and reasonable person. (unlike some of the specialists I saw)

I have brought articles for her to read and she usually peruses them during our appointment and talks with me about them. So things aren't perfect, but the fact that she believes me and has fought for me in the past wins out. But I don't expect her to investigate my illness much on her own time. She has told me her limitations, will help me with referrals, and has helped me tremendously with disability paperwork.

Now my mom has the same issues with doctors, only they are more compounded because she is much sicker than me. Carcinoid syndrome is very rare with less than a dozen docs in the US who understand it and know the latest research. Her onco is kind of like my PCP - not an expert, but willing to follow the advice of the experts on her disease. We travel yearly to see her expert doc. He's also read this experts publications and agrees he's top in carcinoid research. He's still got quite an ego. I go with her to all her appointments because he often discounts her symptoms, and sometimes argues about the advice her expert oncologist gives. She's too sick to argue back, so I get to diffuse the situation by saying something like "so you're saying Dr. so-and-so's opinion isn't valid... or when she says she has 12 episodes a day, she means she flushes and feels faint, nauseated, diarrhea, etc..." Then, he'll backtrack and say he wasn't discounting anything... so what can I do to help you?

It's very hard because most docs are very afraid of handling my mom's complicated medical issues. He's willing to try, and is willing to comply with the advice of her expert onco. We have to deal with an inflated ego at times, but he is willing to work with her which is more than any other doc in her health plan. And she often needs supplemental IV's and electrolytes which his office can give her without her being admitted.

It's sad because if we get sicker, then we really need a collaborative relationship with our docs more than ever. But by then we're too sick to initiate it. If you don't have family or friends to help you advocate for yourself, and your doctor isn't willing to see things from your perspective, you're in a bad place. This is why I think it's so important for us to have a collaborative relationship with our docs from the start.

[erik]

"thankful", I think your notion of an "advocate" is really important. This stuff wears down an already tired patient... it's easy to give up or compromise on so many things, and that is a shame.

One other angle, I have an HSA (health savings account) where I can deal straight with a doc, somewhat restoring the old direct doc-patient relationship. For example, one of my docs had to stop taking a particular insurance company because he would do full checkups and sometimes get paid $0.23 for the deal... he loved seeing me because I pay him directly (out of my HSA account) and he gets to feel like a doctor again (rather than just an underpaid plan administrator following rote procedures). When confined to normal health plan rules, a doctor who might get excited to see a "mystery disease" ends up being frustrated at how little doctoring they get to do nowadays... so we end up being very frustrating patients for them. Building the direct doctor-patient relationship can help a lot with that.