My Doctor Fired Me
Several times I’ve had to be dragged kicking and screaming to medical treatment. No one else did it for me; so I had to learn to drag myself. It was a long and harsh journey, but I determined to be an empowered patient and no longer an ostrich hoping that ignoring problems makes them go away. I don’t take too much credit for this decision since a terrible disease drove me to that point.
That determination is being tested severely. I want to share my story with you.
Calling radiology
The results of the long-awaited bone scan indicated that I had no sign of “metastatic or osteoblastic lesion.” Since the purpose of the test had been to look for inflammation (from Rheumatoid Arthritis) and not cancer tumors, I called the radiology department and inquired about whether scans are ever re-read. The technician stated (verbatim – I took notes) “Our radiologists do not re-read. They’re competent radiologists.” I asked whether it would be possible to ask a radiologist a question about my report. He said, “They do not talk to patients. They are going to feel insulted that you called. You see, you’re not a physician. You’re a patient. And you’re trying to tell them they’re wrong, you understand?”
Thinking about the facts
My doctor had told me that every patient of his/hers gets a “negative” result on their bone scan and only ordered the scan because I requested it. I kept staring at my images and reading articles about scans. I’d talked with three patients who had “positive” results on this same type of scan. They said that my scans looked like theirs. Ultimately, I wondered whether there is a problem with how scans are either read or performed when 100% of RA patients from a practice have negative results. The times for my scans were all shorter than the recommended lengths. I started to worry about whether there was a problem. I read: “Normal radiotracer uptake in the bones appears as a uniform gray in the image.” Uniform gray does not describe my scans.
The more I learned, the less my scan made sense to me. What effect did it have that my scan was performed in 25 minutes when other patients told me it took 45-60 minutes? Websites such as Lakeview Imaging confirm the longer time under the camera is needed. My hands were scanned separately, but for only 5 minutes, not the 10 to 30 minutes as described on various sites such as Diagnose Me. Scholarly articles over the last twenty years indicate that bone scans can successfully reveal RA inflammation because it “allows visualisation of synovitis in patients with RA,” Annals of Rheumatic Diseases.
Asking my doctor
Since only a physician can request a second opinion of a scan, I sent a note asking my doctor if I could please have that done. Upon receiving my letter, my doctor sent me a letter terminating me as a patient. I called the office expressing surprise and disappointment, but I was told, “The doctor stated that the scan is not to be used to diagnose RA activity so it would not show anything. The doctor will not order a re-read.” Fighting back tears, I asked, “Am I still fired?” The manager said, “Yes, that is the doctor’s wishes.”
Fear is the problem
Perhaps my doctor ordered the test to pacify me and lost patience when I requested a second opinion. I asked my friend ePatient Dave how it had all gone so wrong. I was willing to hear the truth. He explained his view:
- Patients have a right to ask even unreasonable-sounding questions if they need to; and mine are reasonable questions.
- We should not feel fear to ask questions about what is going on with our own bodies.
- Sadly, this response shows that their priority is not my well being.
Relaying the events to a friend that evening, things were clearer. I spoke passionately: “We should not be afraid. This is my body and my life. I should be able to politely ask questions without feeling fear.” There is enough fear from the disease and the medications. I am tired of living in fear that a doctor will reject me.
Resisting fear
My first step to resist fear was writing the swelling confession one year ago. I felt afraid that my symptoms were unusual and that I’d be rejected for revealing them. I gained courage because I finally had a trusted doctor who validated my symptoms and was more concerned with treating them than talking me out of them.
It was a major turning point for our online community. There are over 200 370 comments that paint a picture of RA that had not been painted before: swelling does not specifically correlate with pain, disability, or damage. Thousands of us have discovered we are not alone and are no longer afraid to discuss the relationship between disease activity and swelling.
I admit to having fear right now that some doctors who’ve read or promoted my blog will turn away at this point. Of course I’m afraid that readers will become more timid toward their own doctors after they see what happened to me. And I’m afraid I won’t find another doctor to skillfully treat my RA.
I’ve determined that I won’t be trapped by fear. Our health depends upon our ability to bring honest questions and have discussions with our doctors. Our well being and our lives are at stake – that is worth the effort to collaborate.
Edit 5/12/11 The bone scan was re-read and both reports were published on this site. Read it all here: New Reading of the Nuclear Bone Scan: Credibility is Everything
MORE BACKGROUND INFORMATION: Click here to explore links about the use of nuclear bone scans for inflammatory arthritis diseases like Rheumatoid Arthritis.
NOTE: For more background, be sure to read my original post: Nuclear Bone Scans for Rheumatoid Arthritis or Scintigraphy
Wow, I’ve never had a bone scan either. I must say I am now more confused than before. I just had a visit with my Rheumy doc, he said all my pain is either OA or Fibro right now. I was all swollen the week before I saw him. My elbow was so hot and inflammed. But, still that isn’t RA. I don’t know what the heck to look for anymore. Swelling and heat I though was RA. But now it’s NOT??? Aaaahhhgggg!!!! Help!!!!!
If you’ve read a lot of comments here, you’ll notice that we hear that a lot. It’s not easy, but a second opinion (or 3rd) sometimes leads to a doctor who knows better so you don’t have to convince them. I can’t tell you what a relief that was to me to find back in 2009.
True, swelling and heat is RA. But most of us don’t stay in that state all the time. So many patients don’t constantly exhibit those symptoms, especially in the clinic.
I agree with that, Kelly. Before my last visit to the rheum doc, I was swollen and red, hot, but then, in the office, I was only swollen. Talk about frustration. My rheum said my fibro was more than likely caused by the lack of treatment on my RA for so many years. What drives me crazy, is my “fibro points” still hurt. What is nice, is I’m slowly beginning to feel the difference between the RA and fibro. The fibro affects my skin (feels like razor blades scraping on my skin if it’s touched) and my muscles (twitchy/ache like flu). When my RA flares, my neck, hands, shoulders and back feel it a lot.
Keep trying to find the one doctor who will listen. In the long run, you will be happy you did.
rawarrior Kelly I am so very sorry. And people wonder why we hide it?? So unfair. I’m so sorry.
Yes, my orthdontist doesn’t want to treat a person with RA (yesterday’s blog) and this too. It has been a rough month. Thanks for saying so Amy.
The orthodontist and the doctor are both blowing my mind. I’m sorry, Kelly!
Hi, I’m new to your blog. I have RA as well, and I’m sorry your Dr. felt he had to terminate your relationship. My son has had on and off joint pain for years that we have not been able to get a diagnosis for. He has seen my rheumatologist, and recently, he ordered a bone scan to specifically look for signs of inflammation, so I guess I don’t understand why your doc said what he did. The practice I go to has a Dr. who is also a researcher, so maybe they are more apt to do tests some would consider unusual for our condition. Good luck finding a new doctor!
Hi Theresa,
Good luck to you too. I’d love to hear what your son’s scan found.
I can’t remember everything he said, we haven’t gotten a copy of the report, but from what I remember, he showed high activity in his knees, ankles and wrists, which is where he has his pain. He also stated that his joints looked like a much older person, he was 18 at the time of the scan. No diagnosis yet, blood is always negative. He was treated for Lyme disease when he was 14, that’s when the joint pain started. I’m sure he’ll get a diagnosis someday, but now he’s the one who has to get himself to the doctor, as he is now 19 and in charge of his health. I can only advise, and encourage him to get to the doctor. Luckily his pain episodes are sporadic at this time but if it starts to affect his life more, I’m sure he’ll push for a diagnosis.
I hope so Theresa. I’m sure you’ve told him how early treatment would be best. I know about having kids that age – I do too. Their choice what to do.
About the scan: That phrase “high activity” is meaninful – that’s the reason I attached the notes below the post – that, according to many sources, the scan CAN show “activity” if its done right.
Negative blood is not very meaningful w/ RA diagnosis (in the face of such symptoms & scan evidence) since it’s so common & there are so few tests to run at this point.
In regards to Theresa on March 25 2011 about your son. I just stumbled onto this site and I too have RA along with other things, but I digress. My son had simular situation please convince him to go to the Dr and investigate Ehlers-Danlos Syndrome. This is a condition that causes fexible joint which can cause easy fractures. There is a lot more to it please investigate this condition he is at the age it COULD BE urgent to seek medical help. PLEASE look on the the computer for more info and see if symptoms match. Just a suggestion! Christina
Hi Kelly,
I’m horrified that your doctor has taken this action, what an arrogant approach to patient care. It must be very intimidating for these doctors to encounter intelligent, motivated people who don’t want to follow the ‘usual’, tried and tested routine treatments. People like you, who want to take back their lives by being informed and enlightened about the disease that has taken so much control of their lives. People who question the authority of doctors! It seems to me that doctors are too accustomed to being right, without question.
Here in Australia, we have 18,000 deaths in hospitals on average every year due to medical mistakes. By comparison, the road deaths in Australia is around 1500 people per year. There we have a multi-million dollar campaign to slow drivers down and stop drink-driving. During world war 2 there were 39,366 Australian military deaths and 735 civilian deaths. So you can see how huge the number of deaths in hospitals is by comparison – and yet, there is not a ripple of public outcry, virtually no-one knows these numbers and god-forbid that doctors should ever really be held accountable. My father-in-law always said that doctors buried their mistakes! I’m beginning to think he was onto something!
On a more positive note, I hope you find a better doctor to help you with your treatment. I wouldn’t be at all happy dealing with a doctor who had the kind of approach that your doctor has taken! I guess on that front I’ve been lucky, my doctors have always believed me, even before I was diagnosed. Now I go and tell them what I’ve got and how I want it treated. The last doctor asked me if I was in the medical profession, because I know all the right jargon! Ha, I think I’ll keep up that ruse, maybe they won’t treat one of their own as badly as they treat the rest of us!
Anyway, you deserve better!
Cheers
Tracey
Well, our population is higher, so I dont know how it compares but we have about 200,000 deaths due to errors of one kind or another here, yearly.
I think you’re right about the dangerous atmosphere that doctors should not be questioned. There was never any disrespect involved. I respected this doctor and (wrongly) expected the same in return when I thought I made a reasonable request.
My friend Katy found your blog and shared with me! It is nice to find someone who gets it although I wish none of us had to suffer from Auto-Immune Disease! I have Dermatamyositis and Rheumatoid Arthritis! Reading your post today I was like OMG! I did a post yesterday about a meanie billing clerk whom expected I did all of her work and then wrote me a really nasty letter threatening not to take my chemo co-pay card if I didn’t help her…(she didn’t like my tone) OMG…anyways I totally get where you are coming from! It seems anymore we have to be our own advocate but we have to be really careful to make sure that Dr.s and office staff do not get offended or it results in letters or firing? I have never heard of that…that is crazy! I am so sorry you have to deal with that and deal with finding a new dr.
I will pray all works out
xoxo
Sums
Dear Sums,
This is what I’m afraid of – that people will think that the answer is that WE need to be more careful. My letter and all my communication could not have been any more polite. The ONLY way I could be more careful would have been to be silent.
As long as we are respectful, we deserve to be treated as equal human beings and your clerk was out of line, of course. Yes, I pray it works out for the better for both of us.
OMG this gives me such rage.
why is it in this world these days that trying to make sense of things in a rational way seems to just really make some people uncomfortable and pushy. I’ve encountered this attitude in many different areas in life.
It’s incredibily insulting when it’s in the medical field. I would send handwritten letters to both all/everyone involved in this situation, spelling it right out, asking it straight up.
There should be a truth to the situation. A scan should take x amount of time, and if not, why? At least an answer,like, was their machine newer? Truth and answers, thats what we need. Any doctor that doesnt want to let you get another opinion is worth losing.
Why do medical research and trials in such a methodical way, when the execution of medicine is done in such a sloppy way.
Just the other day my gp said to me “isnt it weird that your arthritis is migratory, shouldn’t be that way, might be something else (ive had a + anticcp test)”
My neighbor that has ra told me the other day that she had to beg for the anticcp test, and when it was positive, she said she knew more about ra from reading the net than her gp (and she only reads a quarter of what ive read)
thats just criminal, you need to somehow locate a better doctor. Doctors, medical professionals etc. should not be afraid of the truth.
mj, I couldn’t even ask any of those legitimate questions. The only question I asked was, “May I please ask a question?” And I was told NO. I wrote down everything that was said to me.
I am so sorry your Dr. did that to you. That is so uncalled for.
You have a right to ask for a second opinion. I hope you
find a better Dr. that will listen to your concerns and
be a team member in your health care and not just a
person who does what they feel like doing.
Thanks! Me too.
My heart goes out to you! Just when you expected to find more answers, the rug is pulled out from underneath you! And this was the doctor you thought really had your back.
This is just another reason why we must fight nationalized medicine. When “cases” (people) don’t fit into the expected criteria… and heaven forbid – questions are asked… they are up against a wall already. Can you imagine our inability to fight a system with more governmental involvement?
I hope that you have made some contacts who will lead you to a better and more devoted doctor.
Kelly, I am horrified, angry, sad, and so much more that your doctor “fired” you. I do not think you were unreasonable at all with the requests you had of your doctor. I have found too often that it seems doctors are more interested in numbers rather than the patients themselves. It irritates me even more that the technician doing the scan did not do it properly.
I don’t think you discouraged me at all (at least, no more than I have been already). I do know that had my sister not encouraged me to find answers, I would not have found you, or my doctor, and I would be living in a lot more pain than I am right now, but I’m still timid/reluctant when it comes to talking to the doctor.
Hi Kelly,
I am sorry you had such an awful experience! Tracey and MJ used words like horrified and rage and I completely agree, I am horrifed and feel rage over this too! You have been traumatized. Shocking to know that there are healthcare providers that would be so fragile of ego and short on strength and courage themselves as to ‘fire’ a patient who asked questions! This is the day and age patients are encouraged to be empowered and in charge of their own healthcare. You must have a doctor you can trust and synch up with. You are the consumer…if that doctor and clinic don’t want to deal with those that come to them for care, they are in the wrong line of work. They should be exposed for their lack of empathy and failure to do no harm!
Thank you for sharing this painful but enlightening experience with us. You really are a crusader; warrior. Remember there is always the state medical board who may be interested in hearing about your situation…
Bless you Kelly; hang in there ♥♥♥
Kelly…I am so sorry that this has happened to you…What a blow…It is all about fear…it seems in my experience once they get something in the form of a letter it freaks them out…If docs could only shed that brick wall of theirs and listen to us, our treatment would become a whole lot better. If they became more willing to explain the why’s of our treatment in a way we can understand it would go far in our patient/doctor relationships. They are not used to the educated/empowered patient. They are not used to patients who have that much knowledge of their disease….and frankly, they are intimated by it and it scares them to death. You have done nothing wrong here…The problem is with the system. About.com has a web page talking about the patient/doctor firing issue. I cannot see how you fit into any of the reasons why a physician should fire their patient. http://patients.about.com/od/doctorsandproviders/f/Can-My-Doctor-Dismiss-Me-As-A-Patient.htm
Kelly
you are a first class lady and I have absolutely no doubt that you were respectful to your Dr.
even though logic tells us that it is better in the long run because obviously this Dr was not on team Kelly…..
it’s still SHOCKING and DISTURBING to have this happen.
very sorry 🙁
sorry to say I’ve had similar experiences
best wishes always xo
ps I also find it upsetting how the Drs hide behind their staff ….ridiculous
The doctor who fired you is what I refer to as an “MDiety” -meaning that he and others like him think they are God. As difficult as it is to find a new doctor, maybe you are better off without that one.
I saw a spine and neck specialist this week because I am having numbness in my thumb and tingling up my arm 24/7 on the side where I broke my arm. Talk about arrogant, rude, condescending. She treated me like an idiot and would not allow that my hand weakness on the left is partly RA, partly cervical neck problems and partly due to the fact that I broke that arm, had surgery with a plate and screws and bone graft, and that I was in a cast for 31 weeks. Her final comment was that I am a difficult patient – assume she meant medically difficult. I told her that I preferred interesting patient to difficult. She seemed threatened when I asked questions. There won’t be another appointment with her!
When we have so many health issues to deal with because of the RA, it is vitally important to have doctors who are partners in our care. I hope you find someone wonderful who will treat you with the respect you deserve.
We loved hearing the MDeity phrase. It sums up the problem I believe. I guess I stepped out of bounds without knowing it.
I’m sorry you went through that also. I have been treated the same way you describe many many times (although not by this rheumatologist of course). I am a very polite person and that treatment has not been deserved. That’s why I never go to an appointment alone. I guess there is an unwritten rule that I didn’t get taught in school – not to express opinions or ask probing questions to doctors.
MDiety hahaha thanks for the laugh:)
My orthodedic MD ordered a bone scan for my ankle, and as you said, it takes much longer than 25 min. I had had x-rays that showed damage, and the bone scan was to get more detail before the ankle fusion. (Due to multiple replacements an MRI couldn’t be done.) Your scan looks like my ankle did. There is tons of activity there, and I was told that all those radioactive particles rush to the areas where the body is working to fight or repair damage. It occurs to me that you were fired because your “notoriety” scares him……he was afraid of the heat, so he kicked you out of the kitchen. (my opinion for what it’s worth). I’m praying that you have better luck with your next MD; we all know they are hard to find. (wasn’t this one the “good” Dr.?) All the best, Helene
I was thinking the exact same thing as Helene! I believe that your notariety, not just being the sheep and accepting the answers provided, and your questioning scared him. I bet that questioning the scan made him fearful because not only are you educated on your condition, but “figuring out” how to read the scans probably ticked him off. I would have done the same thing. I had actually just sent off pics of muscle biopsies to a friend. It’s what we do; staying involved in the issues that shape us is huge.
On a slightly different though similar note, I took my girl to the Pediatric Urgent Care clinic last week and met a doctor that totally DIDN’T fit the mold. He told me that he hadn’t learned about rheumatology in 25 years, since he graduated medical school. He was happy to hear that they isolated an antibody to test for RNP. He was happy to hear a brief synopsis of Mixed Connective Tissue Disease and its related diseases. I had stopped thinking that there were doctors out there like that. We have usually just found the bad seeds. Have faith! You will find another doc. I just hope that it’s fast. Hugs!!!
Thanks Danielle. I know they are out there. This one was smarter than many I’d met so it was a disappointment, but it seems your story shows that attitude is as important. Something I’d laid aside because I was so glad to have found a smarter doc.
Kelly
I’m so sorry that your former Dr. is such a jackass!
As an patient you have every right to question and request a reread – It’s about YOUR health, not his or the radiologists egos!
Find a Dr. that will work with you, not against you, and continue the good fight!
And if you feel the need to print your former Dr.’s contact info, I’ll gladly call his office and complain about his horrific treatement of patients!
HUGS
Kelly K
Kelly… I know the angst and fear you faced in writing and posting this. Rest assured that you will not chase away any physician who cares about patient concerns and wishes to make sure that their patient’s questions or concerns are addressed by the time a visit is over.
I have posted a few times on my blog and FB page about the occasional need for patients (and physicians) to request a second opinion on an MRI/CT/Xray or Bone Scans. There are many reasons why a second opinion may be necessary. Perhaps the form your physician filled out did not state properly why the test was ordered. Perhaps the radiologist simply missed something (we are not perfect), etc. I have countless examples of “normal” MRIs and arthroscopic pictures which clearly show pathology. Second opinions are a normal course of events in the health care space. Some physicians may feel insulted when a patient requests or goes for a second opinion. It is not up to the physician, it is up to the patient. If they want a second, third or fourth opinion on an issue they are free to go and seek that advice. I welcome many patients back to my office after they have had their second opinions…. and I have had a few patients stick with the doc who gave them another opinion. So be it.
You were well within your right to request a second opinion on your bone scan and your physician should have been more receptive to your request.
Physicians who are not aware of the Participatory Medicine movement and are not comfortable with empowered patients risk obsolescence as this movement gains traction and patients start to guide each other to practitioners who are more receptive.
Thank you, Howard. Your support and that of other doctors both before and after publishing has been very helpful. As patients, people do not generally want to be adversarial. We just want to be as well as possible. It can take the participation of all to make that happen, especially with a disease as complex and difficult to treat as RA. I hope that doctors like you will be able to help this to be perceived as less threatening to doctors in general.
I’m reminded of a joke between me and a famous rheumatologist last year. He said, “(Use your blog to make all the docs listen to me, Kelly.” I said, “No, I’ll try to get the patients to listen to you. But you’ll have to get the docs to listen, since you are a doc!”
I work for a Chiropractor. We send films and scans out to be re-read all the time. Sometimes the report is completely different. We use a doctor that has a great reputation for proving illness or injury.
I also recieved a report from another Dr. some time ago that was stamped that we could not give the patient a copy of this report, that it must come from the Dr. who wrote it only. HIPPA was stated as the reason.
These scans, reports, and other records are ours, they are on our bodies, we should be able to have full copies of everything and be able to get second opinions on ANYTHING we want. Even if that means proving that some other Dr. is wrong.
You are correct in thinking that the Dr. didn’t value you as a patient. Hope things go better in the future. Continue to stand up for yourself, even though it seems a daunting task given everything else you experience in a day.
I am so sorry you are going through this, Kelly. You were not being unreasonable at all. I can’t even imagine my rheumy doing something like that and I would like everyone to know that there is hope out there and doctors who do care.
My rheumy has always answered my questions, been willing to switch treatments at my request, he has personally returned the few phone calls I have made to him (and returned them quickly), and, when I told him I was going to see a podiatrist for my “bad” foot, asked that I keep him informed and was willing to treat it more aggressivley if she advised it.
He really blew my mind yesterday, though. He called me out of the blue and asked if my ankle was ok. He had seen me at the grocery store the night before and noticed a limp, so he called me at 9am to check up on me. We then talked for 5 or 10 minutes about my foot and the vaccninations I would need for an upcoming trip.
Anyway, I hope you find a good doctor who is actually concerned about your health. Each of us deserves that much.
Kelly I am so sorry that happened to you. It seems to be happenening more and more often but that doesn’t make it any easier – it just shows how broken our system is and the need for shared decision making training for providers.
A physician who has an on-going relationship with a patient can’t actually simply terminate you for no reason and has an ethical obligation to provide you with referrals and care until you are able to find someone else or they are at risk of a charge of patient abandonment.
Of course knowing this does little to repair the relationship you currently have and nothing to ease the fear of how to relate to the next provider.
Kelly, you didn’t do anything wrong.. You are a kind caring bright intelligent woman who is simply the canary in the mine alerting others to problems that no one else can see yet. Situations like this are very similar to learned helpless and can result in hopelessness and depression in people who don’t reach out like you did. Be gentle and kind to yourself..
We are our own best advocates, because if we won’t advocate for ourselves, who else will? I am sorry this happened to you. The professionals you mentioned seemed so out of step with our times. Doctors should expect us to seek out a second opinion. That you questioned your scans and wanted a reread should be accepted as par for the course rather than an insult to this holier than thou radiologist. No one should accept something as gospel truth if they feel differently. It is our prerogative to have a retake if we so desire, and that should be encouraged not muzzled. Shame on the doctor who fired you without understanding or dialogue. But in the long run, he has done you a favor.
I read this blog religiously and it has been a tremendous inspiration to me. You are doing what we all need to do if we are ever going to get better treatments for this horrifying disease.
That being said, this latest post infuriates me. I cannot believe your doctor would do this. Why is it so hard to find a decent rheumatologist? My sister has RA also, and my mother does too. When my sister first started experiencing symptoms she went to my mothers rheumatologist. He told her she did not have RA or any disease because she had no inflammation in her joints. (There’s no denying my mom has RA, because she was only treated with pain meds, her hands and feet are completely deformed) I made my sister switch to my rheumatologist who told her “INFLAMMATION DOES NOT HAVE TO BE PRESENT TO DIAGNOSE RA” . It is not a diagnostic criteria. CAn we not expect rheumatologists to be aware of the diagnostic criteria for a disease they are specially trained to treat?!?!
I also want to say, on a different note, that although it was not a bone scan, it was an xray, the radiologist missed a golf ball size tumor in my bone. Thank goodness my doctor caught the mistake and had the xray re read.
You are doing the right thing by advocating for yourself and all the rest of us who have this disease. I wish you lived near me so you could go to my well educated, sympathetic and wonderful rheumatologist who regularly calls me at home when I am having issues. You are lucky to be rid of that doctor, you can find someone better. I am so so sorry this happened to you, but sometimes things happen for a reason.
THANKS, Terri. Great points.
Who said, “The best defense is a good offense”? Seems to me Helene was right – your doctor was intimidated by your notoriety. And perhaps, fearful of a misstep with your scan becoming the subject of a blog post on RAW.
We all know you did nothing wrong. I’m so sorry that you are apparently suffering discrimination for your efforts here. As an insufferable optimist, I’m assured you will see good come of this, with time.
Kelly, I am speechless–for a change!–but I am also angry, and sad, and so overwhelmed at all that you and many other RA patients have gone through and will still have to go through until something changes! I send “gentle” hugs to you all!
Kelly,
Thanks for all you do on this site. I would suggest obtaining a copy of the bone scans and finding another radiologist to read them, making sure that he/she knows just what it is you are looking for.
I have been trying to find a radiologist who knows about RA who can reliably read them. Yes, I have the copy – the hands image is my hands. The scans were performed too quickly so they are not great quality, but I’d like to get a 2nd opinion.
Wow. Dumfounded. I hope you can figure out a way, and soon, to move on from this experience. What a set-back. Perhaps Dr. Luk’s is right and the request for the scan was not clear enough, or even in the right neighborhood at all. Mabye that’s why all his scans come back negative on RA patients? Do cancer patients’ scans last shorter times? Perhaps the doc is embarassed about it and just doesn’t want to own up to it. Perhaps the radiologist, who m-i-g-h-t just be more interested in the money from performing scans than reading them for different conditions aside from cancer, may have called and read the riot act to the doctor that prompted him/her to react that way. At any point it doesn’t sound like you’ll ever truly know. I hope you will be able to find another rheumy soon. If the scan was not done right for your condition, then I’m not sure if other opinions about it would be reliable or not. Might be. Could you try an orthopedist who might be able to send it for a second opinion? Maybe orthopedists are more familiar with bone scans than rheumys are generally? At any rate, sending hugs to you at this most distressing time.
I am so sorry. I had a similar expirience… I decided to switch my medically fragile child to a different pediatrician. She did not tell us (he has tons of issues) that he had not gained weight and was starting to decline, over a 10 month period. I was in there monthly… he was 4 at the time. So for him, i decided he needed another opinion, she fired me and my four other children. It is so rough! Hugs and prayers for you!
Kelly
My heart goes out to you and when I saw your post I thought, “is is a guest blogger because certainly no one in their right mind would fire Kelly!”
I am not sure if you saw my video about 2 months ago, when I cried after being yelled to by my doctor: http://www.youtube.com/watch?v=HO8jCwM7GDQ
After 12 years with my rheumatologist (who I did like) she berated me to “get off prednisone and lose weight!” I started to try to remind her that I had brought it all the “medical weight loss clinic” stuff in Nov to see if it was safe for my situation. She had said, “Lisa, you are not going to lose weight on 20 mg of prednisone a day. Eat smart through the holidays, let Orencia kick in and we’ll talk weight loss in the new year.”
… but before I could get a word in she instead put her hands up and yelled “SHUT UP!” My husband had come, just because he had the day off. And she yelled out my weight to embaress me and then proceeded to tell him to (babysit) me; to drive me to little weight loss meetings and sit there with me to make sure I went and was weighed. She (who has taught me most of what I know about prednisone over the years) said “Prednisone has NOTHING to do with weight gain or loss.”
There is a lot I wont go into (important pages not being returned to me, taking me off meds for no real reason, not having updated equipment like an ultrasound machine, etc.) but I found another rheum who has a very aggressive plan to get me on a lower dose of prednisone.
This week, even as I was in the waiting room, when he walked by he waved at me (rare). He went down a list of about 20 things I’ve not tried and said to start 2 right away, more in 4 weeks. Most importantly, he said, “If you flare, call me.” I said, “What does that mean, really? I flare every day! Do you mean significant flares like my neck freezing up?”
He said “No, if you flare at all, I want to know.” A nurse said, “He means it, call him, he will call you back and tell you what to do next. He gets calls every day. He wants to know what is going on with you.”
I said, “Before it was ‘grin and bear it’ and see you in 3 months and you tell us how you survived.” They said, “No, that’s not how we treat patients here.”
I would have likely never left my other rheum. She was well respected, etc. I think she is tired and ready to retire (and did find out she’s been trying to get rid of her practice to another doctor even.)
I am so glad it took this experience to make me even MORE proactive. The new doctor said, “When doctors don’t know what else to tell you to do, and how to do it, they just tell YOU to do it – to figure it out on your own.”
Have a good day or two of being annoyed and frustrated. It’s allowed. But be glad that if this is how the doctor operates his biz, you got out when you did. It took me 2 days to write out all of my 18 years of my RA, surgeries, infections, etc. for a new doctor, but I am so excited there is the possibility of getting a tiny part of my life back and I don’t have to figure it all out on my own.
God does have a purpose for this and I pray He will lead you to a wonderful new rheumatologist.
Kelly I am sorry this has happened to you…and like all the others they know and you know you were in the right. God Bless.
1’st – I’m very sorry this happened to you, Kelly. I can’t imagine how frustrating it must be.
“…I’m afraid that readers will become more timid toward their own doctors after they see what happened to me.”
Not me, Kelly. When I read this entry I wasn’t fearful – I was motivated to stand up for myself a little bit more! I’m angry! Angry at your doctor, and angry at the entire profession. How dare they “fire” you. What are you supposed to do? What if you can’t get an appointment with another doc for many months and run out of meds? I hope they thought about that when they made this choice. Otherwise it sounds like some form of malpractice to me. Certainly unprofessional at the very least.
It’s become very apparent to me that many of these docs aren’t in this to fight the disease or to treat patients. They don’t want to help people, they want to make a buck. Perhaps when we ask too many questions and stand up for ourselves, they figure we aren’t worth the money they make from us, and that there is no shortage of RA patients. Patients who will just quietly take their diagnosis and simply do what they’re told.
Good luck with finding another doc, Kelly.
WOW! I don’t even know what to say!! Doctors seem to forget how they get paid….. HELLO YOUR PATIENTS! What happened to wanting to take care of people?? Personally in my opinion, he didn’t fire you. God works in mysterious ways. Maybe this is his doing! 🙂
Oh, Kelly. I know you thought this doctor was “the one.” I’m so sorry. Keep fighting.
Thanks for getting it, Erin. It was heartbreaking in my house at first. Even my kids shed some tears that day.
Hey Kelly.
While it does well and truly suck that your doctor is really not interested in treating patients who don’t revere them as the Godheads some want to be, I want you to know that you are your only advocate. ALL people in service industries, especially the medical profession, need to realize that we have chosen them to give our time and money! We are in control because the moment we enter an examination room, everyone in that office is working for us! At that time there are no other patients as far as we are concerned. If the doctors, nurses, office staff do not address our concerns to our satisfaction, we must let them know! If they do not respond to our satisfaction, then we must tell them that we are no longer their patient and that we’ll take our money elsewhere!
I am tired of hearing about these types of situations. For most of my 50 years of life, I have been in and out of doctor’s offices. Many years ago I took control of my healthcare, and as a result have learned not to take any crap of anybody in the medical field! Am I a sonofabitch to the two doctors I go to? No, but I am forceful and let them know that upfront and ask if they even want a patient like me. Everyone of us suffering from chronic, life-altering diseases must demand to be treated with courtesy and respect.
As a retired physician with diagnosed RA and currently on Remicade, I can understand (but not excuse) your physician. Was he/she a rheumatologist or a gp? Whenever I ask for a test, it is because its results might change the way I am being treated. I am a firm believer in the physical exam, even if this primarily is lost on younger physicians (who rely on nuclear scans and lab tests). I know I have increased inflammation. I know my wrists hurt, therefore I must have inflammation there. Just as we know a negative RA test does not prove we don’t have RA, as a lack of swelling does not show how much we hurt, so a negative nuclear scan does not prove or disprove RA. I have had nuclear scans in the past for stress fx of the leg, of the foot. Positive test resulted in treatment for that fx. What would change if the nuclear scan of your wrists was positive? When I hurt, I don’t need anything to tell me why! I have RA and it hurts!
Kelly,
I don’t even know where to begin. Maybe with I’m sorry and I wish I had the power to make it better – all of it – the pain, the disease, the fatigue, the daily mis-understanding of the “healthy” world. When that mis-understanding includes your most trusted source of hope for wellness – your Rheumatologist – then something is very, very wrong. I will keep fighting the good fight and I know you will too but allow yourself to grieve over this. It’s a sad day for people in chronic pain and disease. You are a huge inspiration to me – I keep pushing through the difficulties of speaking up about Ankylosing Spondylitis because I see you lead the way courageously and with grace and determination. Thank you for all that you do for all of us. We are behind you wherever this takes you. In AS we say “Stand Tall” – I know you will!
Jenna
I don’t understand from your post what you did after your doctor fired you and in response to his doing that. What were your next steps? Thanks.
Kelly, I am very sorry you’ve had to go through this horribly painful situation. I agree with Lisa and others, that a better doctor is out there for you-one who is not afraid of questions nor afraid of patients who advocate for themselves. As Dr Luks said, a good doctor will not be fearful of such a patient. And many doctors do welcome an educated patient, because it means a better outcome, and can make their job ulitmately easier. I do have such a doctor. I know he can’t be the only one out there. I am praying that your search will not be long.
BEYOND PATHETIC BEHAVIOR. What happened to the Hippocratic oath? I’m sorry you have to be the sacrificial lamb, Kelly, but the consequences of this behavior by your physician will only serve to galvanize greater support for PATIENT ACTIVISM & the Empowered Patient movement!! Docs will not be able to survive with this 20th century paternalistic attitude.
Uh, the Hippocratic Oath was gotten rid of in 1870 by most medical schools because it’s an outdated pledge to a Greek god. It also doesn’t say anything about firing patients or being required to see patients.
Kelly so sorry to hear of this event.
When I go to my next appt I asked him to look at an old x rays I have. I got it because the hospital was going to throw 2003 away, I ask if I could have them and they let me. One Rheum i saw in 1995 took x rays, I only have reports on those. My thought was in the 1995’s one x ray was addendum by the radiologist several week after he had given the report. I found this by getting a copy of my dr. office records. I know it is normal for all of us to miss things and RA is very hard to see, at least for me. I think that radiologist shoud specialize like PCP, Rheum, ect.. I was dx with JRA at 18 months of age, can not get records as it has been too long ago, so now I get my records before 5 – 8 yrs old. At that time Rheum did not give much medication to me because I was so young. Now 47 yr old. Have not have new medications and can not get pain meds.. But my PCP help me and I am very thankful. I would not be at a Rheum. now if not for him.
Also my dad saw on TV where people can hire a nurse to go with them to Dr. appts and they know what to ask about a certin conditions. Wonder how Dr.’s would receive that?
Patient advocates & nurses too would be an expensive way to try to insure better treatment, but it sounds like it’s becoming more common. I don’t know how effective it is since the same docs who would give lesser care would be the same ones who would react badly to having an advocate in the clinic. I personally never go to a doctor alone. However, I’d much prefer a doctor who communicates with patients as equals in the first place to the possibly adversarial atmosphere created by having an advocate in the appointment with a doc who doesn’t.
For Pete’s sake, that’s just crappy. I’m not surprised though. I was in and out of specialist offices for decades, but when they couldn’t figure out what was wrong, they’d send me on my way. Well, except for the doc who told me it was all in my head. Lovely.
I was finally diagnosed by a kindly old country sawbones. I went to him in tears, desperate and depressed. He took my hands in his and said “your hands are swollen and hot”. Then he began asking a series of questions that dropped my jaw in amazement. He ran through a litany of symptoms, and I answered “yes” to every one.
He put me on prednisone and methotrexate. When I’m incapacitated with a really bad flare (a couple of times a year) I call him and he gives me a shot to get me over the hump. He keeps a close eye on my labs, and is always available to me. He listens to me, he consults with me, and he asks my opinion. Since I’ve been uninsured for the past year and a half (lost my job, now back in school at the ripe old age of 52, pursuing a nursing degree) he charges me rock bottom for office visits, until I’m financially back up on my feet.
He and his staff have been a blessing. I hope and pray that you find a such a doctor to care for you. Keep up the wonderful work Kelly; I appreciate all that you do for all of us. Don’t get discouraged. There are some really awesome docs out there, I promise!
R/A WARRIOR;GOOD FOR YOU FOR STICKING UP FOR YOU AND SPEAKING UP FOR YOURSELF.SOMEBODY HAS TOO WHY NOT YOU?I HAVE RSD/FIBBRO FOR 14 YRS.I WAS ELECTROCUTED IN AN AMBUSH AS A POLICE OFFICER.I HAD 15 OPERATIONS AND I` M STILL IN THERAPY!I KNOW PAIN.BY THE GRACE OF GOD I HAVE BEEN ABLE TO HOLD IT TOGETHER.I ALSO WAS BLESSED WITH A CARING PAIN DR.BUT I HAVE BEEN AND STILL AM IN THE MEDICAL /INS.SYSTEM OF HOW MUCH AND WHO CARES?IKNOW WHAT IT IS LIKE TO BE HUMILIATED WHEN YOU ARE SUFFERING.NOT ANYMORE.I MADE UP MY MIND I AM NOT TAKING A BACK SEAT TOO MY HEALTH.I DONT CARE WHO DOESNT LIKE IT.I EVEN WILL LET THE PAIN SURFACE AND SPEAK FOR ITSELF FOR THE RIDICULOUS THINGS I HAVE ENCOUNTERED IN MY 14 YRS.I HAVE HAD 18 INS. OR WORKERS COMP. HEARINGS.BY THE GRACE OF GOD AND HIM BLESSNG ME WITH A GOOD ATTORNEY I HAVE NOT LOST.I HAVE ARTHRITIS IN THE SPINE AND SHOULDERS AND FINGERS AND KNEES.I KNOW SOME OF THE FRUSTRATION YOU SPEAK OF IN THAT REGAURD.BOTTOM LINE; NEVER BACK DOWN FROM TAKING CARE OF YOUR BODY.YOU ONLY HAVE 1.
Kelly,
I have said before that you are not just a warrior, but an ambassador for patients. I am so sorry that you had to be frustrated by this paternalistic behavior. I am also humbly grateful that you had the courage and dignity to not only ask for the second opinion the way you did, but share the story with other patients.
You absolutely have the right to question your diagnosis and/or treatment. It is a patient’s right. I am so glad you asserted your rights. I am sorry about the frustration that you feel at having to find a new practitioner. I admire your spirit and know, that while it may make you sad, you won’t let it shatter your faith.
Thank you for sharing – let your community of support know what we can do to help.
Pax,
Susan
Thank you Susan. I’m very grateful for that offer & confidence you express in me. Knowing I was not alone (talking with Dave for example) made such a difference to me. It was my turn to see how much a difference it makes.
I’m not sure yet what is harder – to face this publicly, worrying about those who mis-interpret & misunderstand – OR – finding the new doctor. That is such a difficult thing with RA as I’ve written about so much. There is a shortage & many who are not well trained.
Usually I am not for a loss of words. I have thought of you often today and how wrong this is. Stay strong, these responses alone should lift you higher. You honor us all by the way you have supported, taught and have been our biggest advocate. It will not be in vain and believe the best is yet to come. God Bless.
I’ve been thinking about this all day because I can’t help but see this from both sides. I am a chronic pain patient (not RA), but I am also married to a doctor. On the one hand, I know how much it sucks to have a doctor give up on you, it’s happened to me, it feels awful. And it is already insanely difficult to find a doctor who is competent and not an ass.
But on the other hand, I kind of understand (as the wife of an overworked underappreciated doctor) why he fired you. I’m not blaming you and I am really so sorry for what has happened and that you have to start from square one, but perhaps I can kind of explain part of it? Please don’t mistake me for being unsupportive, I just feel like we’re missing a part of the picture if we don’t consider the doctor.
Let’s say you tutored kids all day. Each day you saw 6-8 kids and you worked one on one with them and their parents to improve their grades. You are trained, you are devoted and you want the best for these kids. One night, a parent calls and asks you to make their child a study guide for their test, but the catch is, they’re not going to pay you for it. You agree because you care about the kid. The next week, 2 more parents call and ask the same. And before you know it, all of them want you to spend extra hours doing work for their children, without offering you any compensation for the extra time you’re using out of your day.
In the same way, when you send the doctor a letter, you’re asking him to do work for you without being paid. And while the bottom line isn’t money (though medical school is extremely expensive and the loans are not easy to repay), the only way a doctor can have any semblance of a home life is if they don’t do errands for their patients. It’s sad, but it’s true. Going the extra mile is difficult to do when it takes away from your time at home and I think that’s not just limited to doctors. If you schedule an appointment, you can get the same thing done (plus there’s no chance of misinterpretation by the doc) and you’re not taking extra time because it’s time they planned to be at work.
Also, when you ask a doctor to second guess his colleagues, it puts him in a really difficult position. There’s no way to ask for a second read without implying that the radiologist wasn’t competent. And while there are DEFINITELY incompetent radiologists, if your doctor doesn’t think this one was, it’s even worse for him. And if your doctor feels like you don’t care about his suggestions of tests or his reservations about them, he’s going to feel like you’re better off without him.
I don’t want you to think that I don’t sympathize, because I do, but you also might want to cut the doc just a little slack. He probably wasn’t the best doctor for you, so maybe in the end, this is a good thing. But either way, I’m sorry you’re having to deal with all of this and I hope you find a new doctor who can give you the best possible care and be kind while doing it. Those doctors are not as prevalent as they should be and I just hope you’re able to find one soon.
interesting choice of jobs to compare…
I have no energy or desire to argue any points… or even type correctly at this point!! but here are a few of my thoughts…
I am a certified teacher~also I spent 8+yrs professionally tutoring until RA stole my life 1 1/2 yrs ago
I gave up all my evenings with my 4 children for a whopping $14 an hour (one of the top paid teachers in my center) …probably just slightly less than the Docs are taking home….
It was bitter sweet for me, being a single mom I really did NOT enjoy all the evenings missed with my own children….
or all that was involved finding care, making sure they had good evenings etc… however, my devotion to my students was not even at issue…my children understood that it was my JOB and HONOR to take care of my students…EVEN when my work came home with me (every night)
I felt this was a good example to my children.
One does not become a teacher for financial riches, right?
Just as my Doc~ I have spent years working on my higher education..paying fees …taking loans…etc.
Usually, I’m not one to whine about teacher salaries..not that I agree with them…I guess I just accepted it as a known when I went into the profession. Many jobs require us to do the work for deeper more meaningful reasons then the paycheck reflects… the examples really are endless…for one there’s the people in the military…
even motherhood!!hahaa
When a patient comes to a doc, we are told that we should prepare ourselves…think ahead of time …what questions we want to ask …be proactive in our treatment… be sure to tell the doc EVERYTHING (I have yet to meet one that will listen to half of what’s going on…)
my point being that if a parent came to me with information about a test my student was facing, I was happy to have that insight.
THEN I could REALLY help my student and make my work with them relevant to their in class studies…….
it is always easier (not to mention, scientifically sound) teaching to find ways to make learning personalized and relevant…
after all, it is my goal as their teacher to help them with THEIR educational journey…
it’s not about me or what I want at all…helping people just isn’t…
it confuses me why any doc is not interested in the details…just seems to be a pretty common experience.
I’m surprised that letter writing is looked at as giving patients a “free” service…it’s not included in the package?!?! I don’t understand why a Dr wouldn’t be thrilled to have a proactive patient just as I am thrilled when I have a self-motivated student…
but, of course, teaching is not doctoring….
I never got the opportunity to deal with only one student at a time… how great would that be?!
jus sayin’
What I have found in similar situations that I have experienced is this, when they are called upon to challenge another doctor, that’s where the buck stops. They do not challenge one another. They will support you as long as it’s behind a closed door and does not require anything of them. But you learn how much they really support you when they have to stand up to their colleagues. A real eye opener. Sad commentary on the medical profession. Devastating to your sense of well being and trust in them.
Hi Kelly,
I’m really sorry that this happened to you. Hopefully you will find another “good” doc. To quote Hemingway, “The world breaks everyone and afterward many are strong in the broken places.”
I’m not defending your ex-rheumatologist or his office in any way, but I’ve learned time and time again that things like this don’t just happen for no reason. There is a reason and it may have nothing whatsoever to do with your questions about your scan. Unfortunately you’ll never get the true answer and the doc may be prevented from telling you. That can be very maddening. One thing that I thought of was perhaps some actions were taken behind the scenes that pressured your rheum to drop you. Like someone on the practice’s legal team deciding that it was too risky to have a high profile blogger as one of their patients. Perhaps your insurance company did not like some of the circumstances around the nuclear bone scan they paid for and pressured your doc. Who knows.
Go find a new doc that will be a better partner in your care with you. They’re out there.
RaRAP, my thinking has been along the same line as yours. I think it’s bigger than this episode.
Kelly, I hope a good doc with enough backbone to accept a high profile empowered patient with unrelenting RA will step up to the plate. No wimpy doc’s allowed! You deserve way better than this doc who wimped out and failed.
You have heard my story before about “almost being fired by my first rheum doc” but thought I should share it here again with others since it is related. In short, after being diagnosed with RA and established on methotrexate, I still had enough pain to stop me from going through a long trip to the grocery store. Doc says “Ronda your pain is from fibro now, your esr and crp are in normal range.” I said seems not so to me, it is the same pain I had when you diagnosed me with RA. He didn’t ask me questions, do an examination or listen to me. He just made an assumption, therefore I disagreed. No evidence based medicine used here. Reluctantly he started me on Enbrel anyway and I had a significant improvement, which really blew the fibro idea out the window.
Finally, a miracle happened and a rheum doc set up shop in my small town, so I made the switch to him since I feel the old one was not worth the 4 hour round trip. I requested my records from the old doc and found many untruths. The big one was that he claims to have examined me and found I had 11 of 18 tender points positive for fibro. Indeed he did not do this exam. An outright, unethical lie! After disagreeing with the fibro diagnosis, he writes that I am an adversarial patient that will be dismissed if I keep it up.
Thanks to Kelly’s advice I knew to get copies of my records for myself. Otherwise I would never have known. I wonder how many of us know what is going through our doc’s heads/ in our records about us that is not true. Food for thought.
Crabby: I have systemic osteoarthritis (yes, there is such a thing — it’s when OA is in many, many places in the body.) Believe me, osteoarthritis can swell and joints do get hot from it. I just found that out from a wonderful rheumy that I met in, of all places, a walk-in clinic. I was thinking that my Adult onset Still’s was making a reappearance. Thank goodness that is still in remission.
While I’m at it, I’d like to clear up another misconception about it being “only OA.” OA can and does hurt. While it doesn’t affect the organs, like RA, it can be very, very painful when spread throughout the body, or even when a joint or two is moderately to severely affected. I am afraid I’ve heard too much about “your Grandma’s disease,” and I am becoming an OA warrior. I have the same problems with joints as RA — I don’t have the systemic effects, other than my bones don’t handle mechanical stress the way average people do. Please don’t minimize my pain. My OA is in my knees, feet, hips, back, elbows, hands and shoulders.
Upon firing doctors or being fired: It could be the best thing that ever happened to you! I have both been fired and fired doctors. When I fire doctors, I do it to their face, so they will get the full force of my ire, It’s funny to see these “God-like creatures” being brought down a peg to human status by a patient with a voice. There are other doctors that don’t mind a dialogue with a patient. I now interview doctors. I let them know up front that I am part and parcel of my disease-process and am a questioning patient. “Can you handle that?” You are right to question a diagnosis. We are not sheep who will merely follow the leader. It’s our lives that are being affected, and we have every right to question.
Thanks for the vent.
Interesting Janis,I have been careful lately not to say “only OA”, since becoming aware of my sister in law’s severe OA, and don’t want to assume another’s pain level. Yes, OA is normally considered the grandma disease since 85% of woman show evidence of it after age 55. Only 1-2% have RA.
I understand that OA hurts, most of us that have RA, also have OA. You say “I have the same problems with joints as RA”, I’m not sure if you understand and can compare the pain of RA joints vs OA joints since you don’t have RA. So I don’t feel it’s fair to make that assumption.
You say you have “systemic osteoarthritis” and then in your second paragraph you say:”I don’t have the systemic effects”
I am interested to read about systemic OA, if you can point me to some good sites online.
Where do we get the words “Its only OA”? Many of us have heard these exact words from our doctors when being misdiagnosed. It is really scary when a doctor says it’s only OA and you don’t know how you are going to live like this the rest of your life when the thought of another week with this pain is terrifying. I have a friend that was in a wheelchair full time until she was diagnosed properly. Many of us would be wheelchair bound if our RA were untreated.
Thanks for speaking up.
I also live in fear of being fired by a doctor when in fact I should be firing them for not listening to my concerns.
I had the same response from a radiologist (actually now that I think about it, it was not the radiologist, it was the people I had to go through to talk to the radiologist) and it turned out they were wrong.
Why is there no consequence for this?
I am very tired of having to live with the consequences of my Drs lack of effort when they just get to keep on billing.
Great comments & question.
There is no consequence for this because patients like you and me do know how to make it happen. There are roadblocks everywhere we turn & everyone we ask says “no.” The insurance company (or government) is the “payer” & considered the customer & we are not in the loop. No one is going to give us easy access to get our “monies worth” but we are going to have to find out how. I did not get what my insurance company paid for (on my behalf) so that is one avenue I’ll explore, but the feedback shows this problem is not rare. Studies show how common mistakes are in radiology (just like any human endeavor) and there should be a way to have them addressed.
I’m reading all of this and I can’t help but think that you Dr. is likely most unhappy about being part of your blog – even if it is nameless. Your interest in the scan seems almost clinical – scientific even. Or a desire to demonstrate to the Dr. that the pain you feel is in fact caused by inflamation in spite of his saying that your disease seems controlled – is that right? You are questioning his judgement – many Dr. don’t like that! But it seems really wrong that he would leave you without continued treatment until you could obtain a new rheumey! Regardless of how he feels about you. You certainly have a right to ask for the best possible care and if you still feel pain or if you disagree you always have the right to question. I think he has behaved badly here.
My doctor does not know about the blog. I have never put any doctor at risk via my blog. Not even the cities where any of my docs practice is known by readers. Or their genders. And my doctor does not believe that my RA is controlled. That has never been said to me by this doctor – quite the opposite. Doc had told me that the only options left are new treatments coming out later in the year. My doctor put me on long-term prednisone even though this is a drug that my doctor usually refuses to use – but said that it is needed since my RA is unrelenting.
That is an interesting question about whether my interest sounds “clinical” – perhaps that is due to how interested I have become in the disease that has so greatly affected my life. Is that wrong? And I try to make my blog readable by patients but accurate enough that clinicians will not dismiss it. That is a difficult task.
I agree that it seems irresponsible to leave a patient on methotrexate and prednisone without monitoring when it will take at least 90 days to get a new-patient appointment with another doctor.
I don’t think it’s wrong to be interested in the science – I find it very interesting – but would much prefer not to be doing so much first person research (as I’m sure you would!) LOL! I have always been told that I have a right to a second opinion – always. I have a good relationship with my PCP and have asked for a second opinion on three occasions, in each instance, she was co-operative and helpful, and we continue to have a good relationship. She didn’t feel in the least threatened by this. One of these was regarding the result of a biopsy and a sonagram that I wanted another look at. I think, again, it’s your health, you are entitled to feel comfortable.
Yes, I say all the time, I’d prefer to have docs who know it ALL & do it all right all the time so we wouldn’t have to do anything. But that’s kinda like wishing Blue Bell cherry cheesecake ice cream grew on trees and made us all healthy – its a silly thought. This disease drove me to this point – it’s not fun – but it’s where I am. I don’t feel comfortable with this, but I’m coping. Especially with the help of good friends & advisors.
Dear Kelly,
I know we have had many hours of conversation about this on Twitter but I thought I should leave a proper comment as I think we have gone beyond the #limitsofatweet.
I haven’t read your blog before and I have caught up with some of your posts before. I’m really sorry to hear the breakdown in relationship with your doctor. We don’t talk about doctors or patients ‘firing’ each other (yet) in the UK NHS and I think it is a pretty rare event.
I’m a primary care doctor so all of this is newish territory for me. But it is pretty clear that your rheumatologist was not happy about ordering that test for you. To me that seems to be where the main problem lies; a second opinion on interpreting the bone scan is neither here nor there.
I wonder what counselling you were given about the pros and cons of that bone scan. I know you asked for it and your doctor was reluctant to order it, but it has a significant radiation dose, and they should have been clear that it could have helped the management of your arthritis in some way. After looking through the research I can find no evidence that an ordinary Technetium 90 bone scan has any place in the management of confirmed RA. There is some doubt about whether it might be useful in distinguishing different forms of arthritis at the time of diagnosis, but the view seems to be that there are safer (lower radiation) ways of doing that. In any case, you have confirmed RA so there would need to be a special reason for why this test was going to help.
One of the papers you link to in this post, from the Archives of Rheumatic Diseases, is not about an ordinary bone scan, but in instead about using Technetium-99 labled anti-TNF. That is a research study and that test is still not commonly available, and the authors don’t even very clearly state what the use of the scan would be day to day. But it is not the scan you had in any case.
Your story tells us a lot about shared decision making and working with patients as partners. Doctors have to have the tools and time to explain to patients why they have the opinions on their care that they do. If I was your primary care doctor I would be trying to make sense of this dialogue between the two of you. I would try and learn about the tests and advise you myself.
I am sorry that you have been hurt so much by this relationship and I do hope that deciding to share your story brings you something positive. I have certainly learnt a lot from this so I thank you for sharing and wish you all the very best.
Anne Marie
@amcunningham
Normally, I would think it’s best to just agree to disagree and leave it at that. Your viewpoint is just different from mine and I don’t want to appear defensive. However since you’ve sent this out to several others, I’m concerned that if I don’t reply then people might be confused. My other reply to you is here – click here. I was told that the radiation was so low that I could get this scan “every day.” Obviously the technician was being facetious, but that’s still what I was told.
Numerous other patients, doctors, and radiology techs have given me an opposite opinion to yours about whether this test might be useful. The links in the pdf also supported that impression, so I included them for anyone who wanted to see what influenced my thinking. However, that is not the subject of this blog post, and I haven’t argued that case here. I don’t think that is the heart of the matter; it is whether I have the right to ask a question. So far, all I have asked for is the permission to ask a question. I asked, “May I ask the radiologist a question?” I was told “no.” When I pressed, I was told that only my rheumatologist could do that on my behalf. So, I asked my rheumatologist to please consider doing so. The dismissal letter was sent at that point.
Yes, I was aware that one of the 20 or so links in this series was discussing the use of TNF with the nuclear material. But as I pointed out yesterday, the list of links provided in the pdf states that they are only provided as the background articles that I read while I was looking at my scans, talking with techs, patients, and getting feedback about my scans. I offered them with specific warning that they was no specific connection to my case or to RA. The statement appears at the top of the pdf here.
I wish that my feelings were not the focus of anyone’s response. My own reaction was actually shock that first day. Since then, my concern has been how to find a good rheumatologist. I actually had to put all this on hold for over a week & didn’t mention it to anyone as I traveled to Jacksonville for the Mayo Clinic Advisory Board meetings and got some other promised posts done.
Thanks Kelly. It is important to discuss this as other people with RA might come to your blog and be unsure about whether a bone scan is a good test for them. I mentioned the Archives of Rheumatic Disease paper because it is is the one that you have linked to in the blog post, rather than in the PDF. As I say, I can’t find any evidence that the bone scan you had has any role in the management of diagnosed RA, and none of the papers in the PDF suggest that it does.
The dose of radiation is certainly not insignificant. The technician who told you that it was safe enough to have every day is wrong. The Fisher paper makes mention of the radiation dose, and I sent you a link to this paper last night which is also concerned about the dose in this kind of scan http://www.ncbi.nlm.nih.gov/pubmed/16894409.
To me these are facts and something that it should be reasonably easy to come to a common understanding about.
Thanks again for replying,
Anne Marie