Disabilities-R-Us

Created by and for people with physical disabilities.

Doctors; Choosing and Making the Most of Each Visit

Jan 20, 1999

This is an archival transcript of one of our past meetings. We don't have scheduled topical meetings anymore, but we're not opposed to the idea of bringing them back if someone is willing to commit to hosting them on a "long term" basis.

Participants already present:
  disabled
  ChanServ ([email protected])
  Lily
  Mooooooo ([email protected])
  camille3
  suze
  anny1
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Lily: welcome again
Lily: The topic is: Doctors: Choosing and making the most of each visit.
Lily: <Lily> I think we should focus the discussion on:
Lily: <Lily> 1. how a patient shops around to find the best doctor for him/her
Lily: so the first question up for discussion is as above
suze: well..i really lucked out, a friend of mine suggested my doctor
suze: she had many positive things to say about her, she was at a good location
suze: for me, and everything has worked well w/her
suze: my only problems have been with insurance issues
Lily: is this a gp??
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suze: she is an internist
T_J: Have we started?
Lily: yes, just, t-j
camille3: ihave to use a dr. that is with my insurance but have many to choose from
suze: currently i can't see her until i change my insurance again, so until march i am seeing a different doc
suze: and that has been difficult
Lily: in the us can you choose a dr.?
suze: depends on plan
Lily: k, in canada we can shop around
camille3: yes
suze: i'm on medicare, i must switch to diff programs that my doc is on if i want to keep her which i do
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haa: :)
ferdette: I live in a small community, so have little choice of drs. and specialists are in larger citys and when you don't drive its hard
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camille3: you can choose any Doctor but depends on Ins. as to how much they will cover if they aren't in your ins. plan
Lily: this is the question we are discussing
Lily: . how a patient shops around to find the best doctor for him/her
Kark: Yes sad but true insurance plays a big part
Lily: :)
Kark: its a shame
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Lily: how des it work where u r, t-j?
suze: if u choose/find a good doc, then find which insurance they take
camille3: luckly I have a big choice so found some good ones
BrwMeistr: I've often asked docs of other specialties , If you had to have ....... done, who would you havew to do it?
suze: i think that's best way to find good doc
Lily: that's good, brw
haa: When you have an incurable disabling disease, a Medical Center is where you want to be...I went to Stanford
suze: yes, there are many factors which go into the decision
T_J: I haven´tchanged dr, but I think I could if I wanted too. Just don´t have so much to do with that side.
* BrwMeistr works in teh medical field, as an x-ray
DrBill: Another issue is there are many Drs whom will not take a person with multiple disablities.
suze: what hospital is doc affiliated with
haa: The Head Of Neurology is a buddy
Kark: Yes I found that too Dr Bill
suze: i was unaware of that, why?
Lily: so it helps to have inside knowledge?
BrwMeistr: Suze, In medium sized cities, most docs are accredited at all of the local hospitals, and here on coastal Georgia, many of teh Savannah Docs work in outlying rural aras, too. I think that's fairly common across the country
DrBill: With multi disablities it take expertice in many disaplines.
anny1: i just started with new doctor and he seems ok but asked me what i wanted to do about situation, i figured that was why i was there to see him
Kark: I have othropedic problems and I was diagnosised with melignant melanoma and had a real problem getting an orthopedic
BrwMeistr: Anny, I'd have asked back, what options do you suggest I have?
T_J: If I want to do something, I usually do that parallel with the regular healthcare. Very often the things I´m looking for, the haven´t heard of in the traditional.
Lily: that sortof leads intoquestion 2
BrwMeistr: TJ, do you keep your traditional docs informed of the alternative med you're using?
haa: DrBill, you are correct, that's why I have multiple drs..family practitionist, Neurologist and cardiology
Kark: Anny I think that since they know you have lived with it all your life they want you to point them in the right direction
T_J: Orthopedic, there is only a few in every community, so in that case, I can´t change.
anny1: that was after we had reviewed the options, we did decide what to do
Lily: 2. how does one, as a patient, get the information we need, even though we
Lily: <Lily> may not know what questions to ask?
Kark: thats what the dr told me anny
BrwMeistr: Lily, one question I've asked often is, Are there any questions I should have asked you that I havent asked?
T_J: Br.:If it interfere, with their treatment.
Lily: o, good idea, brw
Kark: I found that with cancer you need not to be afraid to ask question, they dont tell much on there own
suze: i think u have to ask lots of questions
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Lily: no,many drs. assum you kno things too
suze: your not always ready for the answers
suze: so ask when u r ready
DrBill: My attendants are the one's who write down problems I am having. Then we take the list to the Dr. I personally go brain dead after saying hello.
haa: We do ourself's on our own what we can, and then we start with our Family Practionist as resource and the Pharmacist and the Internet.
BrwMeistr: When I had my cancer diagnosis, I bought a pocket notebook and carried it all the time to write down questions. That helped a lot, and writing the answers for later review is a good idea too...
T_J: Here, I think you have to ask them for the most information, they usually don´t tell everything. But I believe that depends on what´s it about
suze: yes, i bring notes w/to appt. so i don't forget what i meant to ask
Lily: ok, brw, i wondered how you prepared for appointments
Kark: Writing notes is a good thing, I sometimes go blank when I get there
BrwMeistr: Lily, I have access to a LOT of good medical textbooks, so I did a lot of research on my own. Still, I had questions to ask.... And writing them keeps you from forgetting them
suze: doctors can't always remember what was discussed at last appt.
Lily: do many of youhave drs. that make hourecalls??
suze: u have to remind and refresh their memories
suze: nope
BrwMeistr: Good point, suze
DrBill: I take a list of current meds and what blood sugar and ketones are like. This helps them diagnose problems more quicly. Any thing I hate is spending hours in office with no new magazines.
T_J: Kark: I suppose they don´t even know themselves hoew they are going to tell you such a thing
T_J: hourecalls?
Lily: housecalls:)
suze: no, if you're that bad, they might send u to emergency room
BrwMeistr: I know of a couple, but they only go see a very few select patients.
Kark: well Iwanted to know what they did know, once the tought I could handle it the laid it out for me
haa: Yes, Lily. I do have my Family dr. He comes to my home in his Van
T_J: Br. Good you do research on your own.
suze: i think house calls r a rare thing
Lily: me too, haa
T_J: Usually no.
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BrwMeistr: And actually housecalls are prolly less effective, as it makes it more difficult for the doc to make contemporaneous medical notes
T_J: But I think that would do good to a lot of people
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Lily: true, brw
haa: We are lucky Lily :)...I think it is rare here and ins. are starting to refuse to pay for doc house calls.
BrwMeistr: Without documentation, it's hard to keep track of all
BrwMeistr: that's said and done
Lily: but many of us cant go to drs. easily, especially in can. in winter
DrBill: When I travel I have a micro fiche with med history. It saves reinventing the wheel while out of town.
BrwMeistr: Nobody can go ANYWHERE easily in Canada in winter..... (grin)
Lily: :))
BrwMeistr: That's a good idea, DrBill! I usually rely on my memory.
Lily: well, the third point is............
BrwMeistr: But it would be tough to do that in some cases.....
Lily: 3. what do you do if you feel your doctor is not doing his/her job??
BrwMeistr: FIRE THEM!!!
DrBill: I cry allot.
anny1: ask for referral
BrwMeistr: I've fired docs several times when I kept getting contradictory reports and suggestions
suze: i can reason w/doc - she is open
Lily: what if you trapped in hospital, brw??
haa: I had that problem with my neurologist and I talked to my Family Doc and he gave me a referral to another Neurologist.
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BrwMeistr: That's a whole other bucket of fish, Lily! Hadn't thought of that aspect before.....
T_J: I look for other possibilities. They´re do not always know everything. But that depends on what they are supposed to do.
DrBill: It took 5 cardiologist to find one that knew enought to find out what the problem was.
* BrwMeistr usually uses military hospitals, which limits
T_J: haa: that´s good.
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T_J: Often that works
Lily: <haa> I had that problem with my neurologist and I talked to my Family Doc and he gave me a referral to another Neurologist.
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haa: it has worked out very well.
BrwMeistr: I've often been seen by a whole service (usually surgical) in the hospital. They keep watch of one another, in a way.
BrwMeistr: That may not be as easily done in a civilian hospital, though
Lily: is a teaching hospital better, brw?
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BrwMeistr: And I have fired a military doc, too, after a missed diagnosis that could have killed me. I simp;ly refused to allow him to care for me, in writing!
T_J: In a way, though they tend to protect oneanother when something goes wrong
Lily: ahhhh
BrwMeistr: I think so, Lily. Teaching hospitals always have a BUNCH of eyes watching each patient
BrwMeistr: TJ, there may be some truth to what you say, yes, but I think errors are detected more quickly when there's a servoice covering a group of patients
Lily: does anyone have good/bad experience with drs. to share?
BrwMeistr: Even if there's some cover-up, errors are prolly detected and corrected faster than a single doc caring for you.....
Lily: true, brw
Lily: what about real incompetence???
BrwMeistr: And teaching hospitals often are participating in or are aware of pilot programs for new methods and drugs.
DrBill: The thing I hate is It's all in your head and two hours later you are ICCU.
suze: when i was in hospital for several weeks, i felt very shuffled by all the diff
suze: doctors each day
suze: felt i was not getting as good care
Lily: i had md mis-diagnose me...........
BrwMeistr: Go home, force fluids, 36 hours later return to the ER with perforated intestines and peritonitis, BP 72/40...... Been there, done that, have the scars to show....
T_J: I see, often you yourself has too ask for a certain test, especially if they´re more expensive ones.
T_J: And not ordinary
Lily: and almost died of brain tumor
suze: especially difficult when u r having trouble communicating
Lily: is it easier to get expensive tests under insurance plan???
Lily: like MRI's?
T_J: suze: I know the feeling. And while it may be true that misses and wrongs are discovered more easily, they often don´t keep records of what the other ones do.
suze: i'd think, esp. if doc is not concerned about it
haa: Well the doc's don't seem to worry about that, they just seem to order a ton of tests
BrwMeistr: I truly don't think it matters, lily. I've rarely heard a doc ask, What insurance does he have?
Lily: thats good, haa
T_J: Br. I agree
Lily: great to kno
suze: TJ, i'm allergic to penicillen and one of my docs put me on recephrin which is a derivative of penicillen
Lily: so necesity dtermines amt. of testing??
BrwMeistr: I've worked around em for 28+ years, and almost never hear, Thass expensive ya know. Usually tehy order what they think may help to rule in or out a particular problem.
suze: idiot, just needed to look at my chart
BrwMeistr: Suze, did you have any problems with the drug?
suze: yes, i broke out in rash all over body
BrwMeistr: That'll get em to stop the drug in a hurry.....
DrBill: The thing to remember is Drs are practising. They never get it perfect.
haa: symptoms and If you have a diagnosis determine the need for amt of tests.
suze: i showed it to diff doc, who stopped it
BrwMeistr: I ask as I'm also allergic to it, but seemj to tollerate the newer derivitives OK
Lily: how many here are not in USA??
* BrwMeistr is near Savannah, GA
suze: now i tell them i'm allergic to pen, and recep
T_J: I often think:"When you are at your worst in some illness or dis, you must be most alert, because nothing will be given to you for free." You must keep yourself informed, and keep asking about things.
T_J: I´m not in the US
Lily: k, guess just u and me t-j, i asked because i wondered if healthcare affected by different systems, and it seems not
BrwMeistr: Does social medicine make it more difficult to get good treatment?
T_J: suze: That´s bad.
haa: I am an active participate in the whole affair and I fight those docs so I understand what they are up too.
Lily: no, brw
BrwMeistr: Or does it slow some of teh process, perhaps is a better way to ask....
T_J: I know the healthcare in Sweden usually slow in picking up new ideas.
BrwMeistr: I KNOW that some of the procedures I schedule for patients would be done MUCH faster in teh civilina medical world
Lily: canada has socialized med., and i had fast and top-nothch care
BrwMeistr: Lily, are you in a big city? Does it matter where in Canada you are?
Lily: maybe, brw, i was at the toronto general
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* BrwMeistr brb, needs another homebrew..... chatting is
DrBill: On my med list Is a section for drug allergies. I print it out with personal info. Drs. names allergys and current meds. Every time I go to hospital they never remember from day before.
Lily: anyone have any good or bad experiences with doctors that we could learn from??
Lily: kark??
Lily: kim?
* BrwMeistr is back... AHHHHH.......
camille3: just always get second opion
T_J: Always keep at least a copy of your own med journals if you can´t have the ordinary, just in case it would disappear for one reason or another
suze: i agree cammille
T_J: Good point camille
DrBill: You have to know your own body and be able to communicate it to Dr. I am like baby, I cann't point to a place it hurts because I have no feeling.
Woz: yes
BrwMeistr: TJ, by journals you mean personal medical records, right?
suze: i was misdiagnosed for 1 1/2 and my nuerologist wanted me to have surgery
T_J: Yes.
BrwMeistr: In the US a medical journal is a published magazine for docs... Language barrier.... (grin)
suze: i am so glad i went for 2nd, 3rd, and 4th opinion at mayo clinic
suze: i could have had unnecessary surgery
Woz: records tend to disapper so get & keep copies it happened to me
suze: doctors make mistakes
camille3: had a Doctor waning to do surgeryand a pill took care of it
Lily: good point, woz
T_J: Hehe. I meant what you have done before. Treatments, medicines and so on.
BrwMeistr: They certainly do, suze! And usually they are honest errors, human errors.
T_J: suze: What do/ did you have?
BrwMeistr: I think true mal-practice is actually pretty rare
suze: they thought i had myasthenia gravis, i have pulmonary fibrosis
T_J: Ok
BrwMeistr: Suze, that's a pretty unusual condition, right?
suze: yes
BrwMeistr: That makes a good diagnosis MUCH more difficult!
Lily: yes, i agree, brw, some drs. are simply more intuitive than others
DrBill: I took 16 years for the Drs to find the nerves going to my heart were severd when I broke neck.
DrBill: Some things hide, give diferent symptoms and that is what is treated.
Lily: i told sue, she could have the last few minutes to present an idea she has. Would you like to now, Sue??
BrwMeistr: Bill, thaqt wouldn't seem too unusual to me. It's not like they are right there on the surface, easily seen, like a severed vein....
suze: sure, thx, well..i've been talking to people on the channel
suze: about the possibility of having a gathering at a central location
T_J: BR: Just because it´s rare doesn´t make up for errors in the treatment
suze: that is very accessible so that we could meet each other
suze: i was wondering if people were interested in such an event
Woz: the law requires that med records be made available thay can charge you for copies
Lily: any reactions???
T_J: Then they shoukd at least tell you that you ought to have a second opinion, since they are not sure.
camille3: yes suzewould be great
Lily: to suzes idea??
suze: i thought we could do it in summer or fall at a hotel to meet and enjoy each other's company in person
BrwMeistr: Suze, Would likely be fun, but I have no leave accrued, after spending 7 weeks at home following surgery.... B-(
DrBill: Suze I would love to meet the others, BUT I am now homebound and unable to travel anymore.
Woz: do this in writing if thay dont produce in reasonable time thay can be fined
BrwMeistr: party at DrBills!!!!!
BrwMeistr: (grin)
suze: ok, i will send a message to disabled list so that those who are
suze: interested can contact me
suze: thx
haa: where are you at DrBill....party time!!!
DrBill: Bring your own chair.
suze: and a special HAPPY BIRTHDAY to LILY!!!!
Lily: thank you, suze
DrBill: I'm in Yakima, Washington.
Lily: awwwwwwwwwwwwwwwwwwwwww
suze: and thanks for graciously handling meeting today!!!!
Lily: thx:))
T_J: Well, that would be nice and good (Suze idea) but I can´t join in that case, since I´m so far away from the rest of you.
BrwMeistr: HOPS country!! I'm coming, Bill......
camille3: yes lily very good
Lily: yor welcome
haa: DrBill, I just south down the coast from you...Los Gatos, Calif :)
Lily: thank you all for coming!!!!!!!!
suze: thx lily
T_J: =)
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T_J: Only fun and informative
Lily: im glad you enjoyed, t-j
haa: see ya'll later...break-time and maybe later in #disabled
Kark: YEs it was good, sorry I wasn't involved more
BrwMeistr: Woz, the fining is likely dependent on the state you live in... But prolly a good idea
T_J: Lily: You´re welcome, an interesting meeting
DrBill: Many micro brews here in hop contry.
Kark: do you feel socialized medicinne is better
Lily: mooooo, cud you stop log, please???
T_J: Me?
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T_J: Do you asked me Lily?
Kark: oh well I waited to long to ponder that
Lily: please, feel free to continue discussion, tho:))
Woz: on making the most of each visit tell them exactly what you want & expect
T_J: Ok
T_J: =)
T_J: Well, what do you mean with socialized medicine?
Lily: night all, im off to bed:)
T_J: Woz, great idea. Then they know what you´re up too
Kark: Like was mentioned earlier in canada you get treatment equal to anyone
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BrwMeistr: G'nite,lily! Was a good evening
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END

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