Well, now that I am past my one-year anniversary, I get to endure my rheumy's bouncing in the door chronic first question of "how you doing, this is your time to complain." Let's see, you have allowed (if you are running on time) seven minutes for me to explain 90 days of going blind, TIAs, MRIs, new medications, and all the new aches and pains and symptoms that change 24/7 the past 90 days.
I give up and plan to say nothing. It always falls back to his blood test and he refuses to deal with anything other than rheumatology, ie he won't treat an infection even if I am burning up with it at his office, wouldn't culture my mouth sores which happened to be visible the day I saw him but won't be visible when I see the primary, blah blah blah.
I am starting to think there really isn't any point in saying or interacting with them anymore, it doesn't mean or change anything, they have made their minds up before they walk in the door from the blood tests they pulled the week before. I guess legally they have to see you in person to continue the script. I just realized the only joints that are really swollen are my knees and in one year, he has never examined them once. I also read that before you start MTX you should have a chest xray and be tested for things like hepatitis, which he failed to do.
Oh well, tomorrow is another chocolate in my autoimmune box to be given, not chosen. I am losing ground here, fast.
How about write it all down or type in all up and hand it to him
That is what was suggested to me, because I do not like to complain verbally, but I will complain on a piece of paper.
When my RD's nurse asked me what I was there for, I gave her my list and she went and copied it and put it in my file. Then I handed my RD my notebook with the pages of my "complaints". Seemed quite effective... might do it more often since they make a copy of it and put it in my folder... might be good for later use for when I switch RD's.
Cathy -
Don't answer. When he sees you're ready to begin - hit him with all your questions - slowly and methodically. You might consider asking him to be more proactive. Like how come you didn't __________ last time. Then move on to issues you have and deserve to be addressed.
If he doesn't - go find somebody else. They're out there. Find the doc that will work with you.
Pip
It really sounds like your Dr. is not giving you the care you need. I always make a list of things I want to cover with my rhumey and pcp. I make a copy so he has one too and we go down the list together. It's a pretty efficient use of my appts. I also include a list of my meds, how many are left, refills left or needed, etc. It sounds like you may need a new one if he is not willing to cooperate.I tried that, I fax it in about a week before the appointment. He never responds. A good idea, but he seems like he is crystallized. I know my great new primary is in touch with him, and he knows already about the blindness because the opthamologist cced him. But nothing, even the TIAs, which technically he should be doing the blood clotting testing. Actually, I think my case is over his head. I am researching other doctors in the area and am thinking of starting to interview again, but its too much to think about, starting all over again. With the lupus, I think I should be also seeing an immunologist, but there doesn't seem to be any in this area. And then I think, what's the point? My gosh, find another doctor if you can!Know any good ones in SWFL? I have run through four already :)I sorry, Cathy.
Best of Luck!
Thanks Joonie, and everybody else - its nice to know SOMEBODY CARESI'm pretty discusted because I went to a dermetologist yesterday, wrote an extensive note about (my heart operation in Dec, related to drugs and what he planned to do to me!) he didn't even read it!!
I think there is a conspiracy going on with this 15 minute thing, sort of like TV (a little tiny bit of programing between the ads!),
the doc's are all in this together and have it all down to make us have to keep coming back....wouldn't want to solve all of our problems , listen to what's wrong with us, take care of it all at one appointment!!
I'm paying 5 for Remicade, and hoping it works, having my doubts today!! Lynda
I've wrote before that I've never had more than fifteen minutes for an appt. and I've been able to get all my questions answered. I've had longer initial consults and there have been times when I've requested a longer appt. and I've been given the extra time. One time I actually got up from my seat in the exam. room and leaned against the door so that the RD couldn't leave. I told him that I wasn't finished and that he needed to listen to the rest of what I had to say. You have to take control of the appointment from the moment you walk in the office. Cathy, I can't imagine that you wouldn't do this. You sound exhausted and ill. I understand the energy that it takes to do this but you have to. I'd talk to my primary about the indifference that this RD is showing you. Maybe a word from the primary might help Mr. Personality. I wish I had more encouragement or help for you. I've been overwhelmed with complications and pain and actually broke down and cried 2 weeks ago in the RD's office. Tears work.
I know my RD doesn't really address any issues unless they are related to my RA meds. Even if I have a sinus infection I contact my primary so I really don't need much from my RD other than monitoring of the meds and evaluating the RA/PA status. My RD's office is always filled with patients. He manages to keep to a pretty tight schedule so that his patients don't wait and he and his office staff can get through the day. If you need a longer appt. time request one. Believe me he'll bill the insurance for a longer appt. and get paid. Keep us posted on how you're doing. Lindy
Lindy - well, that's one reason I am so discouraged. I asked my great new primary for a referral to the rheumatologist in her group because I wanted to switch, and she was really enthusiastic. So I saw him about a month ago, and when I asked about switching he said "______ (first name of my current rheumatologist) and I have an agreement that we won't steal each other's patients, so you stick with him or it will cause problems for him and I". So I already have tried that route. But last night I asked in another forum and had a reply for someone across the State - it would entail about four hours of driving, but what the heck.
I told the primary I wanted to switch because last appt I showed the rheumatologist this bad bruising I had in the great toenail bed after I fell down the stairs about six months previously and had broken the toe next to it, which I can have elective surgery to fix. The great toe nail bruised suddenly and just appeared months after the fall and right next to where the break was in the toe next to it was this weird pure black spot, about the size of a pellet. The rest of the nail bed was blood red. He said, what did you do, take a magic marker and make that mark? I am so slow on the update, it was weeks before I realized my doctor thinks I am MAKING UP and coloring or whatever to make myself look worse to him. That's why I asked for the referral to her colleague in her group, and he turned me down because it would hurt _____________'s feelings. The primary wasn't happy when I told her the black magic marker story, and thought it was a good idea to switch. I haven't seen her since her colleague refused to take me on. He did agree that I hadn't been tested properly.
I really really really really am tired of all of this bs.
Its rotten that we have to fight so hard for proper medical care. I ALWAYS type a list as well and bring it with me or if there is something that I think they might need to look up, I will fax it to them a few days earlier. This doesn't help at all with my rheumy but it seems to help with the pain doctor I see.Micheleb - depression is their only answer anymore - my depression was so powerful it grew nodules on my forearms and caused blood-proven severe pancreatitis attacks that caused my gall bladder to become infected and diseased and had to be removed. Oh, and convinced a GI specialist to do a biopsy for cancer. That's powerful depression.
They give depression medication to little kids now, just to get them started early on being drug addicts. I know deep down its because there are no answers and no help for a chronic, debilitating, deadly disease, but do they have to be so durn mean and ugly about it? And I tried a teaching hospital, and my insurance only allowed a second opinion at USF Tampa - no exam, just a talk. And he gave me a third diagnosis, so this is getting to be a joke. We don't have the money to go to say a John Hopkins and get real help.
I really don't have anything to add anymore, they hold all the cards and are busted without even a pair to bet on. Except the guaranteed monetary payment from me and the insurance company. Talk about a stacked deck.
I definitely agree with typing up everything and handing it to the doctor.
It just blows my mind that there are doctors like that out there. Makes me wonder where they got their degrees. Bottom of a Crackerjack box?? How do these people live with themselves??
Wow, this is crazy. I shouldn't be surprised, I have worked in health care for years and I thought I have seen it all.
This just breaks my heart.
We don't need AD's (some do and that's different). We need to be listended to.
From the AP angle, we don't hear a lot of good coming out of Mayo. Same research; same angle.
Pip
Well, I just read this thread and I'm floored and appalled.So I had my appointment and its the first time I haven't gone in with a folder, or questions, just sat there, just kept repeating I was fine.
And he must be in contact with my new primary and been warned because this was a different rheumatologist, plus he let something slip that only she knows about my pain meds, so perhaps she straightened him out that I was unhappy with him. I had written her a note after her colleague wouldn't take me on and expressed my dismay over that one, and she already knew my reasons why I was unhappy with my current rheumatologist.
Anyway, he had my last two faxes in hand and went over the same question, which was what is a rheumatology emergency - when do I call the rheumatologist (the last time the receptionist lost the message, I obviously survived). So he was very good about explaining that and usually what he does is prescribe a steroid blister pack for six days to help you get through it. He also said the severe body cavity pain I have been having lately was the reaction to the bad HSV-1 outbreak I had about a month ago, which jived with the research I had done, so that was encouraging.
He really didn't have much to complain about as my blood work was perfect, and as I always get a copy, I mean it is perfect. The anemia is gone, the ESR was normalized for six months now, the sero positive back to seronegative also for six months. So we cut my Plaquenil in half and he said I could come back in either two or three months. I picked three months, less is more for me.
Thanks for all the input and at least this is a place to vent a little. I am doing exactly what he asked me to do, I am a compliant patient, I just haven't understood all the hostility. It was completely gone and he was a changed doctor today. Then I went to my primary's lab for my 8-week thyroid blood work and all the paperwork was missing and she doesn't work on Fridays. It' always something. Cathy
OK, I'm lost. Why did you just go in and be compliant? I mean, I'm glad you got him to dance a different tune, but???
Are you dumping him anyway?
Pip
Pip - we had a fully engaged conversation when I started out dead silent and just saying fine, and asked no questions, complete switch to my all organized, ready to go pro-active last year's attitude. I am positive my new primary has spoken with him, he slipped up. Yes, I will go back in three months. He must be doing something right, my blood work was perfect, and I mean perfect. I feel like krap, but from reading all the posts in here, I don't get the impression that anyone feels good all the time. So maybe I should delete the whole rant LOL I have gotten three referrals and my primary always calls in my lab results (once she gets the paperwork right), so I might ask her again what she thinks if her colleague wouldn't let me switch. I think its coming down to I am giving him one more chance, he was a changed doctor today, helpful and talked to me and answered questions. That's all I ever wanted. But he still says its RA as #1, lupus second, and I have two other rheumies saying Lupus #1, no RA. I give.