Medical Forum / Diseases and Disorders / Arthritis / April 2005
Need the group's advice
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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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