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Medical Forum / Diseases and Disorders / Arthritis / April 2005

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tejoyo@yahoo.com - 09 Apr 2005 19:43 GMT
You guys are about the best support and advice I'm getting right now.
Please help me make a decision. I've already posted about the
rheumatologist who is helping make a diagnosis (Dr. W)and how I am not
going to stay with him. I trust him and I know he's on cutting edge as
far as treatments. I have been given the names of 3 other
rheumatologists who are supposed to be hand holders (which is exactly
what I want) and excellent doctors. Can I interview them (well, two of
them-one already works with the doctor I'm seeing) I mean tell them my
diagnosis and just talk to them and get a feel for them and their
knowledge and treatment preferences? I've been ill for a long time and
been through doctor hell with another autoimmune illness and I've
learned to take a more assertive role but I know doctors have a hard
time with it. I know that when Dr. W gives me my diagnosis he's going
to want me to start treatment and I need a doctor who's going to be
extremely responsive because if I'm having side effects like nausea
it's going to affect the few days a week I'm able to work etc. and I
need someone to work with me. I'm extremely grateful to have several
good choices. In all this sadness this is the one bright light. Anyway,
how would you approach this-do I start treatment then switch doctors or
find a doctor first?
Smokie Darling (Annie) - 09 Apr 2005 20:21 GMT
tej...@yahoo.com wrote:
> You guys are about the best support and advice I'm getting right now.
> Please help me make a decision. I've already posted about the
[quoted text clipped - 16 lines]
> how would you approach this-do I start treatment then switch doctors or
> find a doctor first?

I don't see a reason why you couldn't "interview" them, but be prepared
to pay them for their time.  I guess it depends on your insurance, do
you need referrals?  That could be a problem.

Perhaps you could speak with a nurse in each office over the phone.
They generally are a "bit" more free than the doctor (well, not really,
but the nurses around here will make time to hold my hand).  They
should be able to give you a feel for the doctor.

I'd begin treatment, simply because I am an example of what happens
when RA is mis-diagnosed (and I am not the only one).  If I could go
back, I'd do things alot differently (of course, I'd have to go back
knowing what I know now).  Who knows, maybe I wouldn't have ended up
completely disabled, but then I also would not have made some of the
friends I've made as a result of this disability (or diff-ability if
you prefer).

Smokie Darling (Annie)
tejoyo@yahoo.com - 10 Apr 2005 00:00 GMT
Annie,
What would you do differently that you didn't do the first time? I
understand I would have to make an appt. and pay. I suppose there's
nothing wrong with going to them and then changing my mind about them,
I've done it before. Right now I have a PPO and can see any doctor I
want to-most of them don't take HMOs so I'm not sure what I will do
when this runs out. Anyway, one thing at a time.
> tej...@yahoo.com wrote:
> > You guys are about the best support and advice I'm getting right now.
[quoted text clipped - 43 lines]
>
> Smokie Darling (Annie)
Smokie Darling (Annie) - 10 Apr 2005 02:05 GMT
> Annie,
> What would you do differently that you didn't do the first time? I
[quoted text clipped - 3 lines]
> want to-most of them don't take HMOs so I'm not sure what I will do
> when this runs out. Anyway, one thing at a time.

Well, we are going back, knowing what I know now?  I would have
insisted that my former doctor find a treatment for my "disease" (she
thought I had Sjorgrens Syndrome, knew zip about RA and refused to
learn anything about it), or send me to someone who could find a
treatment.

Had I gone to a rheumy then (he said that the nodules on my elbows were
a "dead giveaway" that I had active RA, that 99% of people with those
nodules are RA sufferers) I would have started treatment (something
simple would have probably worked in the first three years) sooner, and
would have had better control of things.

As it was, I walked around taking Motrin (2400 mg RXd a day, sometimes
I'd take an extra) and nothing else, until it got so bad I couldn't
walk.  Now I'm completely disabled.  I cannot sit or stand or lie down
for more than 20 minutes at a time.  Somedays (the good ones) I can
walk a bit with a cane, on the bad ones I have to rent a wheelchair.
Eventually, I'll have to buy one because I probably won't have good
days as often.

It's been pretty much a given, from my first RD to the current, that if
I'd caught the RA in the beginning (having great insurance at the
time), I could have gained an advantage on it.  They've all said that
if it's caught within the first year or two, it's much simpler to push
it into remission, and keep there with "maintenance" doses of "gentler"
medication.

Do what you need to do to get taken care of.  Do it NOW.  Don't think
it's going to get better, or today is just a bad day.  Fix what you
can, and don't take the "this is the best we can do for your condition"
crap for an answer!

Smokie Darling (Annie)

< <snipped> >
Kelly - 09 Apr 2005 23:59 GMT
This isn't advice because I think only you can decide what to do.  I do not
have a hand holder - instead I have the best doctor with the best and most
agressive treatment record.  This has paid off many times in the past 9 - 10
years.  My general practictioner does my hand holding if I need it.  Just my
way of doing things.  I am not saying I don't go into everything with my
eyes wide open and that I take a passive role - I don't. But I do not go to
him for his bedside manner.  My gp helps me to manage minor side effects -
my rd manages the major ones that affect blood, urine etc or that my gp
decides needs his help with.

Hope this is of help.
Kelly
> You guys are about the best support and advice I'm getting right now.
> Please help me make a decision. I've already posted about the
[quoted text clipped - 16 lines]
> how would you approach this-do I start treatment then switch doctors or
> find a doctor first?
Walt Hanks - 10 Apr 2005 01:29 GMT
When we moved East, I interviewed several doctors, including
rheumatologists.  I simply called and asked their secretary to have them
call me.  I explained what I was doing and asked if I could ask them a few
questions.

Those who said I had to schedule an appointment or who just didn't call
back, I scratched from my list.

I continue this practice whenever I need a new specialist for myself or the
kids.

Walt

>> You guys are about the best support and advice I'm getting right now.
>> Please help me make a decision. I've already posted about the
[quoted text clipped - 16 lines]
>> how would you approach this-do I start treatment then switch doctors or
>> find a doctor first?
Alix M. Hall - 10 Apr 2005 01:50 GMT
I let y'all hold my hand and go for the best in town.  But I would make the
doc and his office staff aware that you are allergic to stuff--so they can
be more responsive if need be--but go for the best--and come here for whine
and cheese--Just my not so humble opinion!!

Alix
tejoyo@yahoo.com - 10 Apr 2005 22:11 GMT
For those who said I should go to the best and forget about hand
holding what I meant was someone caring and responsive.
Perhaps using the term "hand holding" I was lapsing into my old
sarcastic days when I still had the energy and memory. Last week,I went
to the best rheumatologist in the country-Dr. Wallace. He has written 5
books and is editor of a textbook. He ha written a couple hundred
journal articles on rheumatology, is associate professor of medicine at
UCLA and is helping to develop new drugs to treat lupus and RA, running
trials etc. When you mention his name the first words out of everyone's
mouth are "he's the best" If you would like to see his qualifications
go to yahoo and type in "Daniel Wallace CV"
Well, I already posted what happened in my visit. The only thing he
told me when he gave me an injection was that I would feel "great" well
days later I'm still feeling sick to my stomach (lost 4lbs so it ain't
all bad), and while my hand was mildly better my knees were aching so
much I could barely walk. The rest of the time I've been in bed with a
level of fatigue that I have never experienced in my life. I got up
only to post to this group. He said he would not answer any questions
until he saw me again and was certain of the diagnosis. Is he a good
doctor? Yes. One of the best? Probably. Is he helping me? Not right
now. I'm sicker than I've ever been in my life and scared and feeling
like killing myself. After 11 years I don't have the energy for this. I
need a doctor who is very good and up on the latest things but someone
I can call and who will be responsive.
Walt Hanks - 10 Apr 2005 22:45 GMT
Technical skill is of little value if a patient has no confidence that you
care.  Compassion is a legitimate demand, IMHO.  I have fired more than one
highly regarded doc over the years because they were inaccessible or lacked
a willingness to listen to me.

Keep looking.  There are plenty of good RDs out there, you just have to get
through a few thorns sometimes before finding a rose.

Walt

> For those who said I should go to the best and forget about hand
> holding what I meant was someone caring and responsive.
[quoted text clipped - 20 lines]
> need a doctor who is very good and up on the latest things but someone
> I can call and who will be responsive.
Newsgroup Spambuster - 11 Apr 2005 00:20 GMT
I have to agree with Walt, compassion is half the battle in finding a
good doctor.   It the doctor is the "best", but doesn't listen to your
concerns or isn't willing to talk things through with you, then I fire
them.  I want someone who is good, but who also listens and works with
me not against me!

In finding a new doctor, I first ask friends and other doctors I have
who they would recommend.   I then make a list and contact those
doctors.   I have found that some will let you interview them over the
phone, some prefer to be interviewed in thier office, while others will
charge a fee to be interviewed.  I, myself, don't pay to interview a
doctor.   If I really feel that is the doctor I want to go to, I will
just make a regular appointment with them.   It usually doesn't take me
more than one or two visits to know if I am going to like a doctor or
not, so if I don't like them, I just find someone else.   Make sure you
have a list of questions already made up  of what you want to ask the
doctors and of what is important to you.   For example:  you might ask
the doctor how his office handles after hour calls/emergencies, how his
office handles prescription refills, what are his views on pain meds for
patients, is he willing to work with you and take into consideration
your feelings/thoughts, etc.  Does his office mail copies of test
results or give them to you when you come for a visit, do they charge
for copies of medical records, what is thier turnaround time for acting
on calls for prescription refills, and so on.

You will also have to try and set aside your "bad attitude" as you put
it about doctors and be honest with them and tell them everything.   Try
not to go in with a chip on your shoulder and try not to be fearful or
distrustful of them.   Tell them if they are doing something that
doesn't just set right for you.   I have found for myself, at least, in
the long run, if I am honest with them and tell them when I am unhappy
about something, they will try to correct the situation or will try to
find a good compromise for you and for them.

Good luck in your hunt for a new doctor.  Sure hope you can find one you
can trust and work comfortably with!

Donna G
d'huit - 11 Apr 2005 00:24 GMT
> Technical skill is of little value if a patient has no confidence that you
> care.  Compassion is a legitimate demand, IMHO.  I have fired more than one
[quoted text clipped - 5 lines]
>
> Walt

i agree.  compassion definitely is a biggie, walt.  a little compassion goes
a long way to help the patient's healing processes.  we really are not that
far away from being the children we once were, when it comes to needing to
be heard, having our experiences validated, and needing access to authority
with answers to our seemingly niggling questions.

i went with "the best" neurological diagnostician (who is tops in his field,
but has little or no peripheral sight for much beyond the puzzle before
him), but only for the answers i needed.  for the treatments of those
answers, i went for someone else, with compassion as well as intellect and
skill.  i'm glad i did both, though for different reasons.

kate

>> For those who said I should go to the best and forget about hand
>> holding what I meant was someone caring and responsive.
[quoted text clipped - 20 lines]
>> need a doctor who is very good and up on the latest things but someone
>> I can call and who will be responsive.
Alix M. Hall - 10 Apr 2005 22:47 GMT
If you are that sick, I would call and insist he see you NOW--or refer you
to someone who WILL see you NOW--vague promises of you will feel better that
end up making you feel worse are unacceptable--If you are so sick that not
living is better than living, you need to see someone soooonest--after all
You are PAYING him!!  If you are too sick to rant and rave get someone to
rant and rave for you saying you are so ill from his shot that you cannot
get up and they fear for your safety--Feel better--Alix
Rosemarie Shiver - 11 Apr 2005 03:03 GMT
  The best. Uh huh. It was the best that treated my uncle and he ended up
with his hands looking like seal flippers and at that point they told him
there was nothing they could do. This wasn't all that long ago (4 years) so
why didn't "the BEST" that NYC have to offer offer him aggressive RA
treatment to save the use of his hands?

   I personally don't care about compassion as long as the treatment is
effective. My uncle is a retired artist who spent the majority of his life
expressing his art thru his handiwork and that was STOLEN from him by the
BEST. Do I resent those docs? You betcha.

     I strongly agree that the phrase 'the best' is too often
untrustworthy. Especially if it's equated to 'high priced' like my aunt
equated it. I can't even begin to think that having seal flipper hands from
RA is an appropriate outcome these days...and particularly from some of the
highest paid RD's anywhere.

Yet and Still Angry At Them Hugs from Rosie
Signature

"If you wanna get it done, you gotta fight for yourself" -- Meat Loaf, Bat
Outta Hell II

> If you are that sick, I would call and insist he see you NOW--or refer you
> to someone who WILL see you NOW--vague promises of you will feel better that
[quoted text clipped - 3 lines]
> rant and rave for you saying you are so ill from his shot that you cannot
> get up and they fear for your safety--Feel better--Alix
Nann Bell - 12 Apr 2005 04:07 GMT
yeah, I've fired 2 RDs in my years and one of them was "nationally known" and
a frequent presenter at conferences.  Couldn't see past my labwork though.  
Changed to an "ordinary" RD in town.  Some of the problems the other one had
been discounting, the new one helped with ON THE FIRST VISIT.  An RD who
actually listens to you and relates to his/her patients well is more valuable
than gold.  I did later have (briefly :() a widely known RD who was
excellent, so the two qualities aren't mutually exclusive, but the guy you
saw surely didn't embody the combination.

What part of the world are you in?  Someone here might know a truly good RD
in your area and be able to help shorten your search.

Signature

Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

>    The best. Uh huh. It was the best that treated my uncle and he ended up
> with his hands looking like seal flippers and at that point they told him
> there was nothing they could do. This wasn't all that long ago (4 years) so
> why didn't "the BEST" that NYC have to offer offer him aggressive RA
> treatment to save the use of his hands?

 
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