My Doctor Fired Me | Rheumatoid Arthritis Warrior

My Doctor Fired Me

nuclear bone scan hands & wrists
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:

  1. Patients have a right to ask even unreasonable-sounding questions if they need to; and mine are reasonable questions.
  2. We should not feel fear to ask questions about what is going on with our own bodies.
  3. 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

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

152 thoughts on “My Doctor Fired Me

  • March 26, 2011 at 11:45 am
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    Patients have rights, but so do doctors. If they no longer feel they can work with you effectively it is in no ones interest to continue.

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  • March 26, 2011 at 12:01 pm
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    In bone scans osteoblasts take up radioactive marked (technetium-99m) biphosponates. So you can detect areas of high bone turnover, which could be a fracture, a bone metastasis, and more including inflammation of joints, which affect the bone around the joint, or mechanical stress to the bone around a joint caused by OA. The pictures of OA and RA usually differ in bone scans, though OA joint might also be activated and show a similar picture, but then you don’t treat bone scans, so you can compare your physical examination of the patient with the bone scan, something which radiologists can’t do. The pattern of affected joints in RA, OA, PsoA, peripheral arthritis in spondyloarthritis differs.

    My initial point was: the radiologist is usually not trained in joint patterns, which the rheumatologist sees every day (and works with). The radiologist looks for what he is trained for: bone metastasises, that’s what most bone scans are done for. He often misinterprets scans done in the field of rheumatology (at least that’s the case in Germany). Or you have one radiologist working closely with your center and the radiologist learns, what you want him to do.

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  • March 26, 2011 at 1:16 pm
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    Kelly

    Firstly I am so sorry about what you have just experienced. I was both horrified and extremely upset that you were treated in such an unsympathetic manner. I know that you have been on an endless journey to find this Rhemmy and have had more than your fair share of let-downs in the past. I’m thinking that both their behaviour and the fact that the one Rheummy who really seemed to ‘get it’ is the one who has done this. This must have really compounded your distress. I really DO understand (but it’s not about me right now).

    Also for maybe the first time, I can’t agree with two of the comments made here – firstly the one about the explanation from a Dr’s ‘point of view’ – you can’t compare apples with oranges and if it was purely about payment or lack of to do a task then there are many alternatives that could have/should have been suggested. I’m sorry – that would be simply justifying a Drs poor behaviour and an excuse.
    However I was delighted to see Howard Luks had written in support of you – he is a Dr that needs to be cloned!! God Bless him.

    Putting my RNs hat one for a second – if your scans above do not show an inflammatory response then I for one don’t know a hang nail from a sinus infection!! The whole point of a scan is to show up ‘hot spots’ as they are commonly called.

    Yes we know Drs are busy – they are also generally very wealthy thanks to their patients, but that does not excuse your Drs response. There are so many ways to communicate concerns that they may have other than through a 2nd or 3rd party. It’s like breaking up with someone via a text message – AKA ‘Cowardice’. As for the radiographer too – that came back to you 2nd hand as well. Why do I get the feeling that they may have had some communication between them long before your call – with your actual question being lost in the translation of Chinese whispers?

    Your Dr obviously does have a fragile ego – but that doesn’t help how it has made you feel. If it wasn’t for their patients they wouldn’t have a job!

    The other post that I don’t agree with is re you using medical terminology!! Why shouldn’t you? There is no law that only permits it’s use by Drs. I have had that said to me too – ‘Maybe you shouldn’t use medical terminology when talking with the Dr’ – well there is a universal truth here – you can’t forget what you already know. If you address the Dr with the correct terminology – they should if nothing else realise that you are an informed, intelligent patient and answer you accordingly. I don’t wish to appear argumentative, but it seems that the person who posted can’t have read about you and your experience of RA and has completely missed the entire point of your blog.

    I have absolutely no doubt whatsoever that you approached them with your gentle and appropriate manner and you were simply fobbed off by people who seem insecure in their own knowledge.

    Kelly, you know that the road may be a bit bumpier again for a while, but you also know that you do have the strength to get back on track and truely find a decent and caring Rheummy – not one who is so willing to leave you high and dry just because they can.

    I know God will steer you to the right person. Please know that my thoughts and gentle hugs are being sent to you from this side of the world. I’m so pleased that you allowed that vulnerability to show on this blog – knowing how hard you find it. You know too that you did nothing wrong. God Bless you Kelly – you are in my prayers.

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    • March 26, 2011 at 9:21 pm
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      “Yes we know Drs are busy – they are also generally very wealthy thanks to their patients, but that does not excuse your Drs response.”

      I understand that you work with doctors, but I can assure you that the VAST majority of them are very, very, very far from wealthy. My husband’s medical school loans total more than 200k and he’s being asked to repay them while in residency because they no longer offer the option of deferring due to economic hardship.

      He currently works 80 hours a week, almost every single week, minus the 2-3 weeks he gets off per year. If you do some quick math, he makes just a little over 11 dollars an hour. ELEVEN DOLLARS AN HOUR. I am almost certain that you make more as a nurse than many doctors you work with. These doctors have done 8 years of school for this, plus the years of residency. They are not the wealthy men they used to be.

      Doctors are no longer at the top of the economic pyramid and though this shouldn’t need to be said, the good ones aren’t in it for the money anyway and they and their wives resent the implication that they are money mongers who feel they can treat their patients like crap.

      Please don’t make generalizations about doctors, I’m sure you’d be offended if I said all nurses were crabby and rude because one yelled at me yesterday while convinced (incorrectly, I might add) that I turned off a patient’s IV. If you hold all people in a profession to the worst of their peers, there would be no reason to have faith in anyone anymore.

      Reply
  • March 26, 2011 at 2:31 pm
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    Hi Kelly,
    I am a retired RN, and a patient with Stills Disease (juvenile rheumatoid arthritis, adult onset), Sjogrens syndrome & Acromegaly.
    I have never heard of a physician “firing” a patient for such a reasonable request. It is outrageous, and I am so sorry it happened to you!!!!
    I know that one size doesn’t fit all, but sometimes I believe their egos get in the way of compassionate, competent patient care. Shame on them.
    Seriously, I am still shaking my head over this one!

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  • March 26, 2011 at 5:15 pm
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    My reply to this comment:

    “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’m not sure what this poster means by “nationalized medicine.” Perhaps she is referring to the new health law which sets up exchanges for the uninsured to buy private insurance, expands Medicaid for low-income Americans and most importantly, bans private insurance companies from denying coverage to people with pre-existing conditions.

    The termination of RA Warrior as a patient, is the unjust action of one independent RA doc in private practice, and in no way relates to the new health law. There are doctors that don’t like to be questioned, or take the time to respond to questions. In my early years with RA, I asked a doctor if symptoms I was having could be related to my RA meds and his reply was that I “watched too many soap operas.” Huh? I don’t even understand that reply. Well, that was my last appt with him — I terminated him.

    I have since been with my current RA doc for 23 years. I am totally comfortable bringing up any questions or asking for any tests. He’s a very dedicated and caring doctor. I dread the day when he may retire. He will be hard to replace.

    Kelly, good luck in finding a new RA doc — may you find one that values having a proactive, empowered patient.

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  • March 26, 2011 at 5:25 pm
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    What I have found interesting about what has happened here, is that it is in stark contrast to my very own experience. I had my nuclear bone scan about a week or two prior to Kelly’s. I did not ask for mine as mine was ordered by my rheumatologist in consultation with a colleague of his. I am a lot like Kelly as I have no visible signs of RA. Swelling is rare, but the pain and stiffness never goes away. I have yet to respond to methotrexate, prednisone, plaquenil, humira, enbrel and few others which I don’t remember. My rheumatologist wanted confirmation of inflammation. Without the visible signs of swelling the only way he could get that was through a nuclear bone scan. He said that the radioactive dye that is used will enhance the areas that are currently inflamed. See pic above. My scan was 2 part, First scan took about 30 minutes and then I was injected with the dye. I came back 3 hours later for part 2 and it was about 2 hours long.

    After the scan I had my rheum appointment and my doc walked into the room and said, let me tell you where you hurt today and he preceded to point to all the places that the scan showed active inflammation. He was more excited about the results than I was. He said it confirmed everything and that now it was his job to get the inflammation under control to stop the damage.

    It is obvious to me that my rheumatologist understands the nuclear bone scan and how to interpret it to better treat his patients. While he does not use it on everyone, he stated he uses it on cases like mine. As far as the second opinion or re-read that Kelly asked for, my doc would have encouraged it. He has sent me to Mayo and to the University of Wisconsin not because I thought I wasn’t getting the right care but because he wanted to be certain he was providing me with the best care. And truly that is what is at the root of this situation for Kelly.

    To me the results are clear on this scan. It is identical to mine. The difference is in the way the doctor/patient relationship is handled. And that is what is most discouraging.

    Reply
    • March 27, 2011 at 1:59 pm
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      Kelly, this post, and I guess a lot of others didn’t show up in my feed, I guess because it is limited to how many posts it shows. I know I can change it, but it might be there is a setting on your end you can change too?

      Reply
  • March 26, 2011 at 6:16 pm
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    Maybe you should look to a nurse practitioner. I was an RN for over a dozen years. I had just finished my black belt in karate, and had backed off my very intensive training, when I started developing pain in my right foot. My orthopedic surgeon who had treated my bad right knee, thought I had Mortons neuroma. I was very tired all the time, and I was running a low-grade fever. My right foot would swell up and be very painful. Nothing seemed to help. Finally, I spoke to the nurse practitioner in the practice. I told him about my weight loss and my fever and the continued pain. That is when I got my first bone scan and went to the rheumatologist. The orthopedic surgeon looked at the results and was pacing back and forth. He said “you have a stress fracture but it’s in the wrong spot for a stress fracture.” He thought that I might have rheumatoid arthritis at that point. We were back-and-forth about whether it was RA or OA. Then my left knee swelled up. We thought it was a torn cartilage. However when I had my arthroscopy, we found severe inflammation. That’s when I was treated for full-blown seronegative rheumatoid arthritis. Then I went back to graduate school and became a nurse practitioner myself. I have had several rheumatologists over the years. Some of the best were nurse practitioners. We have advanced knowledge about inflammatory conditions and autoimmune disease. And we listen to our patients. I currently work in the veterans hospital and take care care of people in gastroenterology. One thing that is important to know is that sometimes rheumatoid arthritis is seronegative. People with seronegative RA can develop inflammatory bowel problems as well. When checking credentials for the provider check to see that of the person is board certified. Sorry for this long post, however I am using a new voice recognition software to spare my hands! I think it’s an excellent investment.

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    • March 26, 2011 at 6:26 pm
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      PS. Prednisone does cause weight gain. It changes glucose metabolism among many many things. I know these challenges since I had a partial knee replacement and had to be a prednisone for a long time when I had to stop my methotrexate.

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  • March 26, 2011 at 6:36 pm
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    If he actually discharged you without giving you the names of others who are available to take over your care, you have a patient abandonment claim. And report his/her behavior to your state medical licensing board either way so that they have it on-record.

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  • March 26, 2011 at 7:59 pm
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    Kelly, if this is a recent occurence and isn’t too far in the past, this is one thing that your insurance company can go to bat for you on. I truly hope you keep photocopies of your test orders. If you call your insurance company and say that your doctor ordered a specific test that takes 45-60 minutes for the purpose of looking for evidence of inflammation, but instead they did a different test that only took 25 minutes (which would not give the contrast needed for the test your doctor ordered), and looked for evidence of cancer. While you’re thrilled to not have cancer, you’re concerned about being stuck paying for a test that wasn’t ordered; you’re also upset about NOT getting the test that *was* ordered. The insurance company can request a review; they’ll ask your doctor for his notes and they’ll ask the radiologist for his notes – if you kept a copy of the radiology referral, that will prove exactly which test the doctor ordered and why. If they’ve already paid the claim and later determine that they shouldn’t have, they’ll get the money back – any you shouldn’t be on the hook, either, if the insurance company says that they did the wrong test.

    Also, the AMA says that doctors are required to provide enough advance notice to give you time to find a new doctor (usually 30 days), and provide care for you during that time. The law varies by state about specifically how long you have, but dropping patients immediately can be considered abandonment and isn’t legal. Best of luck.

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    • March 26, 2011 at 9:11 pm
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      Good to hear from you. Yes, it’s been a few weeks & we are pursuing the things you mentioned. All good points & thank you. I hand carried the order and it was not specific, saying only full body bone scan. There was a clause in the dismissal letter saying that if there were an emergency within the thirty days, I’d be seen anyway. Waiting time for a new patient appt is about 3 months.

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      • March 26, 2011 at 10:28 pm
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        I was also fired from a rhuemie that I loved as a doc. It is a shock to say the least. During this “transitional” period I used my GP to continue my med scripts, etc. I was fortunate in that I was able to say that I wanted to change ra docs and would he be kind enough to fill in until I sourced a new one. Hopefully your gp can step up to the plate and be your pitch hitter until you find a new rheumatologist. Good luck in your search. And do know…you are better off without this doctor then with this doctor.

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        • March 26, 2011 at 11:39 pm
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          Good to hear from you murph. “Shock” is the word. I can see now that I crossed a boundary of which I was unaware. I do have what I call here “the Good GP.” That is a good point.

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          • March 27, 2011 at 12:16 pm
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            Are you per chance referring to that boundary of medical land minds of which we have no map to navigate 🙂 Been there…done that. I am hoping you post on your search for this new ra doc as I am sure many here will want to know if you have found any new insights into a search. I have used the online post sites where people rate docs, asked around, got referrals…did basically all of it. Unfortunately it never has gauranted a good fit. I even did the pre-interview (setup an appointment just to do the interview and explained to the receptionist ahead what I was doing so they didn’t bill for that level 4 service…the ya know $400 + one). And sometimes I think docs burn out after a period of time. I think that is what happened to the doc that “fired” me. She did offer to cover until I sourced another specialist but I preferred to use my GP. Like did I really want a doc that didn’t want me sending my records and such to a new doc…not. I also hand carried my records to the new doc to be sure nothing was hidden in the details which I know you have already warned about. Great site here! I enjoy reading your insights. I have had aggressive ra for 12+ years now and am exhausted from all the medical hulabaloo that goes on.

  • March 26, 2011 at 9:01 pm
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    What I come away with after reading all these comments is “You want effective treatment. It’s your body, your life and you, not the doctors or their staff, who will have your life as well as that of your family affected by your treatment or lack thereof. You know the cost first hand and you want answers. Or if there aren’t answers you want a doctor who will honestly tell you that. You are a strong woman and I appreciate how much I learn each and every time I read your blog. I understand your enormous disappointment in these medical professionals….the lack of courtesy is numbing. But obviously you are a person of action and I know you will find what you seek and we will all benefit from your experience. God Bless.

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    • March 26, 2011 at 9:31 pm
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      Thank you, Karen. You are right that all we all want is to be as well as possible with the best treatment possible.

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  • March 26, 2011 at 9:56 pm
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    I just read your post after seeing @ePatientDave’s tweet. I have the strongest admiration for you, Dave, Regina Holliday and other empowered patients who are advocating and modeling the kind of courage we all need to have in working with and/or around the medical powers that be.

    In reading about your understandable fear regarding this recent development, an inspiring quote from Marianne Williamson’s book, A Course in Miracles, came to mind. I would not be surprised at all if you were already well familiar with this quote (and may have quoted it yourself elsewhere, as this is the first post of yours I’ve read), but just in case, I hope you won’t mind if I share it here:

    “Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us.’ We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There’s nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we’re liberated from our own fear, our presence automatically liberates others.”

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    • March 26, 2011 at 11:36 pm
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      Thank you, Joe. It is fitting. “As we’re liberated from our own fear, our presence automatically liberates others;” I’ve seen just that happen here and other times on the blog. It’s like I went through a door and thought I was alone. And then I realized right away that there were many others right there going through with me.

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  • March 26, 2011 at 10:09 pm
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    I’m sorry you went through this. Depending upon the size of the community in which you live it might be worth looking either in a university hospital research setting or in an “all inclusive” specialized arthritis practice. University hospitals are often on the cutting edge of treatment and if you allow interns and residents to help your primary rheumatologist sometimes you can get both a lesson with the resident and a free second set of eyes to monitor your disease progress.
    In a specialty practice, the lab, physical therapy, radiology, and primary RA doc are all in one location. Since radiologists are looking for autoimmune disorders rather than cancer as the norm their reports tend to be more focused.

    Good luck in your quest for positive, supportive, effective health care. I’m cheering for you. We are ALL in this together.

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  • March 27, 2011 at 1:39 pm
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    I think this doctor don’t want to be annoy by you. So don’t annoy yourself with him( or her).
    I’m sure you can find a great doctor somewhere.
    Good luck !

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  • March 27, 2011 at 3:32 pm
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    As many other posts made reference to Drs either their manner or their fees, their willingness to treat a patient as an equal in their care or their total disregard for patients – it made me wonder why you chose mine to jump on. There seems only one logical explanation – I briefly mentioned your post. I didn’t leap on you or detail what I found strange about your initial post.

    You make many assumptions about me, which actually feel like accusations to be perfectly honest. You make assumptions about my wages, my work, even the hours I might work, have worked, do work. You assume a lot – yet know nothing of me.

    I could compare my hours and wages, my various responsibilities etc throughout my career, but I would be missing the point. Only you are talking about your husband – I’m talking about Kelly’s Rheumy and it’s the opinion I hold.

    I will refer back to your original post though as I find it contradictory and confusing in part. It would have been easy for me too to assume about you too instead of trying to find out a bit more before answering you. So I clicked on your name and flew to your website.

    With your initial response what I found confusing was:
    1 You criticise me for my comments – yet you say ‘it is already insanely difficult to find a doctor who is competent and not an ass’!!
    2 But then you try to justify the actions of Kelly’s Rheumy because your husband is a resident.
    3 When you brought up the teaching analogy, I thought it must be because of Kelly home-schooling her children. But on your website I saw that you were once a teacher and now it seems you too are a medical student following in your husband’s footsteps – paediatrics.
    4 You also mention how much he dislikes his job I’m not spilling secrets here – you have an open website. You say to him in an open post ‘I know you are miserable as a paediatrician and I know you’re scared that the next residency will be equally frustrating and unfulfilling’.
    5 When I read that I couldn’t help wondering if your post is about you and your husband’s struggles and nothing to do with my comment at all. I am sorry that you have such a serious medical condition and sincerely hope that that fact alone will help you be a better Dr when you get there.
    6 Asking for a second opinion is not asking a Dr to 2nd guess his colleagues. A good Dr welcomes it. I have done so myself in the past and my Specialist was happy to make the referral himself and then discuss it with me afterwards. Sadly he wasn’t a Rheumatologist and he’s not in this country.

    I don’t know your husband and unless he were Kelly’s Rheumy would I change my original post – sorry no. I was referring to Specialists, not Residents. My comments are based on facts that I have seen and experienced. I will say though that I would love to work the hours your husband does and I’d do it for nothing too. You see I have worked many many hours – on average at least 80 hours a week, on call 24/7, and working from home in addition. This is not a competition, you made your comments not knowing my job at all. You simply assumed that I was an RN working 8 or 10 hour shifts!! The other part you missed is that I am no longer able to work as I can barely walk and literally left my job (after struggling so badly and trying not to show it for 9 years getting worse almost day by day) so I went from working crazy hours to being at home and disabled full stop. My story doesn’t end there, but I don’t wish to share more right now. Except to say that I come here as someone with RA, and not an RN as I’m retired now through disability at 45.

    I have a great GP (called a PCP I think) in the US, who is actually happy that I complete compulsory forms for her (that she could charge a lot of money for) but no – I complete them on my laptop, she reads and signs. That’s an example of teamwork there that benefits both of us. It saves her time and me money!
    I’m not so cynical and simple as to think all Drs are ‘in it for the money’ – but sadly many of the good ones don’t make it and probably for many of the reasons that you mention – hours, debt etc etc. I have also had the great pleasure of working with some of the finest Drs imaginable. But they are few and far between.

    I will finish by addressing your comment ‘I’m sure you’d be offended if I said all nurses were crabby and rude’ – well not really, as many actually are. Not all nurses are the kind and caring people that people expect. But if you said ‘ALL nurses’ – I would laugh as it would be ridiculous. But nowhere did I say ‘ALL Doctors’ – it seems you read what you wanted to read. You even quoted me where I said ‘They are generally very wealthy thanks to their patients’. Generally means ‘more often than not’ or ‘mostly’ – it does not mean ALL. I was referring to Specialists – not residents. I thought that that was clear given we were talking about Rheumatologists. Obviously not.

    I must say that it’s the first time I’ve felt attacked for anything I have said on this site particularly when offering support – so thanks Katie for invading my safe place. Maybe you meant to and maybe you didn’t. I certainly wasn’t attacking. I did find your approach on your website a little too aggressive for me(I’ll leave it at that) and I note amongst your comments on your blog you say:
    “In a heated argument, I lose control over my ability to be human and have to have the last word”

    I don’t want an ongoing argument – I’m not a ‘victim’ but I too have more than enough to deal with right now.

    Maybe I’m just too sensitive for blogs and forums as I also feel heartbroken right now.

    Reply
    • March 27, 2011 at 10:28 pm
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      Wow.

      I want to start with something that’s really important to me. I understand that you’re feeling attacked, I need you to know that when I wrote that, it was without malice. I was simply disagreeing with you. The reason I responded specifically to you was because that line I quoted in my reply caught my eye and it just…irked me. I wasn’t trying to single you out or destroy your safe place. If you knew me you’d understand why it’s important for me that you understand this. I am not a person who attacks others. I will disagree, but I always try to do so respectfully. I have been bullied most of my life, first in school and more recently on the internet by anonymous twitter accounts and commenters who spent hours saying things about me that I will not repeat. Suffice it to say, I know what being attacked feels like and I would not intentionally do that to another person. My only intent was to disagree. That’s it. I’m sorry if it came across otherwise, that’s one of the difficult parts about the internet, tone is often hard to discern.

      I do want to address the rest of what you’ve written because I think that there are some things that need clarification.

      When I wrote that reply, it wasn’t with a bunch of assumptions about you. I know nothing about you and I do not pretend to and I didn’t meant to insult you with any assumptions I unintentionally made. I did assume that most nurses are paid more than 11 dollars an hour, which may not be true. It should be though. In my opinion no one in the field of healthcare should make 11 dollars an hour, it’s absurdly insufficient. I also did not, at all, realize that you were referring to only specialists not all doctors, hence my reply. I still tend to disagree that most specialists are rich, but that is really neither here nor there.

      I acknowledge 100% that there are doctors who are asses. There are also nurses, teachers, lawyers, architects, moms, dads, etc who are asses. That doesn’t mean that everyone inhabiting that profession is one. And I don’t feel that acknowledging that some doctors suck totally negates my point that not all doctors suck. Trust me, I wish there were more good ones and all I can do is support my husband and hope he becomes one of them.

      Speaking of my husband, I’ve made no secret that he does not like his current residency. He doesn’t want to be a pediatrician. He has to complete 2 years of pediatrics so that he can become a pediatric neurologist by completing a second residency. In his 2 years of pediatrics he has struggled, largely because this isn’t his area of interest (he’s currently working on endocrinology, which he’s giving a full effort to, but hates, it’s just not something he’s interested in), but also because a NICU Fellow made his life around the hospital a living hell for most of his first year and because of some nurses who have been absolutely awful to him. He is not innocent in all of this, but he is not enjoying his residency because it kind of sucks right now, not because he doesn’t want to be a doctor. We are both very hopeful that switching over to neurology this summer will be a turning point and that he will rediscover the passion that he’s lost along the way.

      My teaching analogy had absolutely nothing to do with how Kelly chooses to educate her children or my background as a teacher. I cannot stress this enough, it was 100% just an analogy. I almost wrote it as a piano teacher/student, but I went with tutor because it was easier for me to write. I didn’t mean to imply anything of it except that it’s tough on docs when patients ask them to do things without coming to the office because it’s more work without compensation. I do think that asking for a 2nd read implies that the doctor feels that the first one is wrong, which is fine, if he actually does think it was wrong. But asking a doctor to ask for a second read when he thinks the first one is right? That is a tough situation for the doctor.

      Also important, I am not in medical school (you can find that listed in the FAQs on the top of my blog tool bar if you’re interested). I am in the medical field, I am interested in pediatrics, but not as a doctor. I won’t divulge my specific field (at least not in public, you’re welcome to email me and I’ll tell you) because of a desire to keep my work life and blog life separate.

      Finally, I can assure you that my comment to you had nothing to do with my personal health struggles or any perceived struggles with my husband. I was bothered by something you wrote and I just wanted to tell you why I disagreed with that sentence. Nothing more should be read into it. My marriage is good, my husband is a great support to me and while my life hasn’t been especially easy for the last few years, I’m doing as well as possible.

      I hope you understand that I have no ill will to you. I have no desire to destroy your safe space or to make you feel attacked. That was and never will be something I support or want to do. I can’t make you believe that, but it remains the truth regardless.

      I can tell that my opinions are not really wanted here and I don’t want to make anyone else feel like their safe space has been ruined, so if you want to continue a conversation, which I am happy to do, you can email me at overflowingbrain@gmail.com. Otherwise, you probably won’t hear from me again. Good luck to you and all who are struggling with RA and other chronic illnesses, I only wish the best for you.

      Reply
  • March 27, 2011 at 10:34 pm
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    I am so sorry that your doctor treated you this way, but it is clear from his actions that your well being isn’t his priority. Don’t ever forget that YOU can fire your DOCTOR too. Too often I hear patients or parents of children say that a doctor told them something and even tho they have questions, they are quiet. My daughters appendix ruptured when she was 2 years old, for 6 weeks we went thru a nightmare as the surgeons refused to operate right away. Anyway, long story short, when her appendix re-ruptured and the surgeon again told me he would not operate for another 2-3 weeks I fired him. He was indignent, insulted and yelling at me. I had hospital security remove him and another surgeon performed the surgery asap. So don’t forget that as a patient, YOU ALWAYS HAVE A VOICE! Don’t be afraid to use it.

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  • March 27, 2011 at 10:43 pm
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    Kelly,
    Wow, this has been on my mind since Friday. You did not deserve this at all. You only wanted the best possible treatment/care. Which is what you will get with your new doctor. Good luck and I hope that you find a great new doctor.
    I want you to know that you help so many of us learn more about all of this medical stuff.
    Thanks and Gentle hugs…

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  • March 28, 2011 at 12:43 am
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    Kelly, I’m going to throw a left fielder out here, just for discussion sake. If the scan hasn’t been paid by insurance yet, perhaps you could ask them to hold off until it can get a second reading. The doc may have fired you so he wouldn’t have to own up to ordering it wrong…or for covering for the radiologist who probably should’ve been overseeing the tech’s better – who should’ve known, or asked the radiologist before performing the test, as to what the proper camera exposure times should be for a patient with RA, who was not there for cancer screening.

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  • March 28, 2011 at 1:04 am
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    Kelly, while I am so sad & also baffled that you have had this happen to you, I also believe that there has to be a better doctor waiting in the wings for you. It is shocking, really. I have to say that I believe that one reason Emily’s former rheumy stopped treating her is because I asked about Remicade once. Apparently, he doesn’t like Remicade. I truly think he took it almost as an insult. Then, when we went to see him when she really went down hill with the Dermatomyositis, I asked for Prednisone. Not an unreasonable request; I wasn’t asking for Morphine or Oxycontin. I just wanted to get some control of her inflammation. I think that he took it as me telling him what to do rather than the begging I was doing. Either way, he obviously wasn’t a good fit, but we’re very happy with our new group.

    One of the reasons that I love your blog is the way that you approach things, and how you try so very hard to never squash anyone’s feelings. You are very to the point, but also rather clinical. I love that! Not only do I enjoy reading your blog, but the comments are generally pretty amazing. This round of comments was even more so! I have to thank all of the people that have posted on this. The doctors, the doctor’s wives, the RN’s and nurse practitioners, as well as people that know the laws regarding this sort of issue. It’s been a very thought- provoking subject for me, and I really appreciate it all.

    Btw- it was a nurse practitioner that thought of Juvenile Arthritis. There’s often something about the practitioners that is kinder, gentler, more understanding.

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  • March 28, 2011 at 5:25 am
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    Ihad one of these scans, I have severe Ra and those wrist scans look like mine. The report the radiologis gave sounded like there was no ra, but the rheumy said all my joints were riddled with ra.

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    • March 28, 2011 at 7:56 am
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      Thanks, Sheena. I heard that type of story from patients, docs, and techs and it really helps that you add your experience to the mix. It’s a very specifc type of scan & what you’re saying is not well known by those who don’t have experience with it regularly.

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  • March 28, 2011 at 9:39 am
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    Thank you Katie for coming back to the blog to explain that your intention was not to offend etc. I certainly appreciate you taking time to do that.
    I also agree that tone can’t always be accurately assessed on the internet and also that it is easy for some to make posts in anger and judgement of others without knowing how it will be interpreted. Hence, I never reply to a comment without considerable thought as once that ‘send’ or ‘post’ button is pressed there’s no turning back. I’m not referring to you Katie, just making a general observation. I’ll also add that I am far from an ‘angel’ and certainly have made many mistakes in the past. Just to clarify – not as a Nurse (audible sigh of relief from everyone who just read that!!)

    I’m sorry that you have experienced bullying and personal attacks especially when done by someone publicly and anonymously. Sadly another flaw seen more often since the ‘net’ became what it is today.

    I appreciate your offer for me to email you personally and down the track I may well do so. In the meantime I wish both you and your husband every happiness in both your personal and professional lives. I very much hope that your husband will succeed as a happy and compassionate doctor particularly because of the treatment he has endured at the hands of others. I really believe that suffering in any form, properly addressed, can offer an opportunity to truly empathise with others such as colleagues, friends etc in a way that would not otherwise be possible.
    I really believe that many things I do today, I do better because I learnt from watching and/or experiencing others doing it less well.

    Good Luck for the future in all aspects of your life.

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  • March 30, 2011 at 3:50 am
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    My Rheumatoid Arthritis doctor did the same thing. I was placed on so many different types of regimens, having allergic rections in the office from the IV treatments, questioning why my fatigue and swelling and pain was worsening and the labs did not show it. Asking for current MRIs, even asking if she would refer me John Hopkin’s.

    I received a letter in the mail terming my care. Then my file that was transferred to my new doctor, I found out did not include my entire file, history, notes, images. They claim they lost them, or have an inability to send them.

    I do not know what is going on. I feel we have a right to ask kindly for a second opinion and to also be frustrated.

    I was continually in and out of the ER, on antibiotics with severe infections, placed on an amount of MTX over the FDA limit, and continued to be switched between biologic drugs in which I had nerve (MS side effects to), shingles, intermitent loss of vision, etc. It was horrible.

    I cannot even get started on employers. It is a shame the diease has to be hidden from them. When I have been forced to inform them, in order to receive time off for the 8 hour treatment, I am conveniently termed within weeks. As if that is not stress I do not need.

    Then people look at me and judge me. Say I am not sick. Why do I have handicap, etc. It is amazing all that we have to go through, with not much knowledge or help from the doctors.

    I also find that I swell more and have increased fatigue when I get hot. Cool, reduces it. Cold aches my joints, but I honestly do better with cooler temperature. A fan, air conditioning, something. This of course is not in line with RA. Maybe it is the nerve damage? Maybe it is normal for my RA. Does anyone else suffer from this? Triggers out of the norm?

    I do not sleep well, but try to keep my head up and put on a smile and work hard, because I cannot avoid a day off. I need to work to afford my disease.

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    • March 30, 2011 at 7:22 pm
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      Hi girl living with RA,

      I also find that warm weather and humidity make me flare as well as rain and foggy days! I’m in my mid-late 40’s so I’m not sure if I’m going through menopause, but i get really hot when I sleep and warm nights are awful.

      It sounds like you are dealing with a lot of symptoms and side effects. I’ve found that simplifying my regime and working out what causes what, helps me to make better medication decisions. Although I should add I decided years ago to avoid methotrexte and other dmards and biologics. I felt I’d rather manage the pain and deal with the deformities. (I still don’t know if this was the right track but I’ll stick with it and see how i fare and yes I do have deformed hands and toes)

      You should also never take ‘vitamins’ and their side effects for granted! I was recently put onto magnesium to help leg cramps at night. Low and behold if I take too much (even slightly) I get dreadful indigestion so everything goes through my system too fast. Needless to say it took me two months to figure out why I was flaring all the time and none of my pain relievers were working! My life was absolute misery. Then I backed off the magnesium and everything worked again. It’s simple, the meds need to be in your system long enough to get into your blood stream! (I take paracetamol which is similar to Tylenol Arthritis). I am reminded yet again how extremely effective these simple over-the-counter meds can be for me in relieving pain!

      Good luck with your endeavors, I hope you find a manageable solution.

      cheers

      Tracey

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  • March 30, 2011 at 3:59 am
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    Does anyone also find the increased stiffness, swelling, redness, fatigue…but then their SED rate and CRP come back with normal limits? I find that my that my other tests come out more abnormal. Also, I just learned that my hormone levels are way out of whack.

    Some say hormones play a huge role in the health of one’s body (Suzanne Somers). I also have been advised that having a gluten free diet as well as staying away from other foods can put RA into remission without the use of medicine.

    Unfortunately, I was diagnosed recently with Stage 1 melanoma (a side effect of MTX), with minimal nerve damage and Shingles as a result of Enbrel & Remicade, and Sjorgens (blurred, loss vision). Frequent lung infections, and bladder infections. Constantly on antibiotics or hooked up to IVs in the ER. With the medicines, there is always increased side effects. I have been off for awhile and hopefully that a committed diet, prayer, reduced stress, rest, and vitamins will help.

    Pleurisy was one of my initial symptoms along with a swollen intestinal track and swollen feet, to name a few. With the medicines, there is always increased side effects.

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  • March 30, 2011 at 12:06 pm
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    Hi there, just found your blog and I am so excited to have found it. I was diagnosed with “some sort of inflammatory arthritis” a year ago. My blood tests are unusual, either only mildy elevated markers or not at all. My Rheum has been fantastic at taking my pain seriously and trialling various meds to get inflammation under control. I recently came under the care of a team of pain management doctors, yesterday they reported their findings, one of which was that my rheum needs to pursue a more specific diagnosis in order to keep treating me. One recommendation was a full body bone scan. The pain doctors have been obsessed with measuring the level of my swelling, which I find fluctuates dramatically even from day to day, sometimes related to the level of pain I have, sometimes not. I am very nervous about whether my Rheum will agree to the bone scan and furthermore whether it will show the results that assist in a specific diagnosis. My Rheum has always been able to feel the inflammation in my joints but is sometimes puzzled when I am finding a joint painful and she doesn’t feel that it is very swollen. I wish I had taken photos of my joints in the last week b/c at times they have been dramatically, incredibly swollen. This seems to be subsiding a bit now and I have no way of knowing if it will be evident when I next see her. The pain docs seem to think that the bone scan will define my arthritis (or prove it) one way or another but after reading about your experiences I am concerned that if the bone scans don’t produce the “proper” result then I will not receive the help I need. Whilst I have always felt that it is important to be your own health care advocate and thoroughly research all options, I am blown away by the amount of disagreement and dissent amongst the medical community. Some Dr’s seem perfectly happy to disregard an entire body of evidence for their own personal reasons. I feel like I am embarking on a renewed battle to get adequate care for myself (it’s taken a while to even get this far) and your blog has just affirmed my feeling that it is MY responsibility to push for answers and research, research, research.
    I’m very sorry that you have been treated this way by your Rheum. I am so hopeful for you that you will find a fabulous new one who will treat your health and well being with appropriate diligence and most importantly treat you with respect and dignity.

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    • March 31, 2011 at 9:20 am
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      Hi Ali, I’ve been so overwhelmed this week, I don’t think I had time to welcome you: Welcome.

      I don’t know why there are doctors who do what you describe (ignore evidence for another agenda), but I think if we find one, and his agenda isn’t our health, then we should move on. Easier said than done, I know. But still true.

      And I completely agree that w/ RA, RESEARCH is not only our responsibility – it’s needed for our fight of the disease.

      It might help you to use the Tags List at the top of the blog & click on Tests for RA. Negative or fickle blood tests are common & reading other patients comments below the posts can also help. Here’s one old post I recommend.

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  • March 30, 2011 at 12:22 pm
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    I have a couple of questions. You get injected with a dye? The dye is radioactive and they tell you not to go thru an airport security checkpoint??and then you lay down and a camera really close to you scans your entire body?? They start at the feet? Is this a bone scan? Takes about an hour or so?

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  • March 31, 2011 at 1:00 pm
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    As a patient with coronary artery disease,with many stents, two open heart surgeries and heart attacks. Type 1 diabetes with complications, PTSD and stomach issues and now RA, it is tough to find a doctor who is not afraid to treat me. I have been told by two doctors from the famous Cleveland Clinic that ” I only took you on because I felt sorry for you, there is nothing I can do for you.” And left me hanging in shock and frustration. I guess that in itself is a kind of firing of a patient.
    I finally found a Rhuemy, but he seems more assembly line to me. Just take the meds, he says and won’t stop to listen to me.
    I am supposed to start Methrotrexate next week and feel nothing but fear. I am not sure if this doctor is just “pushing” the drug or is it truly necessary opposed to something else? Right now I do not feel empowered at all!

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  • March 31, 2011 at 2:51 pm
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    I have been fired five times now, because I dared to question things, and was RIGHT everytime. They fired me because they were embarassed I caught them instead of just fixing the problem.

    Little things like, as I always get my chart notes, being mixed up with another patient halfway through the report, or a regular BP noted in the chart notes when it was a highly irregular hypertensive reading the nurse told me after she did the BP, twice. Or my personal favorite, a PET scan for RA nodules in my lungs and it saying my thyroid was performing normally — um, it was removed 8 years ago. Great …. This doctor FIRED me for finding these errors?

    I just had contrast MRIs on my hands and wrists, which showed active synovitisis at the base of my thumb/wrist. It also confirmed previous xrays showing old active damage. It took about 20 minutes for the MRIs. Did they do contrast, this can make it alot shorter as they don’t have to pull blood to do a quick kidney function test before using contrast.

    The first firing always is a shock, but remember, he is wrong, you are right. Be glad he cut you loose, you need someone who cares. I am about on my 75th doctor, I fire them regularly, and have a wonderful hand-picked team now.

    GOOD LUCK!

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    • April 1, 2011 at 11:33 pm
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      Thanks for sharing your experience! It was a shock & I’m seeing errors in my records too. I plan to correct them for the next doctor, but we were talking about how a prospective new doctor might perceive such patients who correct errors in their records. I guess it will be a sign.

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  • April 1, 2011 at 12:44 pm
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    I couldn’t fight back the tears! I support you to the exponential number, never doubt!

    Last week my Rheumatologist finally gave me Sulfasalazine, after 1 year of telling him that my hands were hurting. He checked for RA and it came negative last year, but my CRP level is elevated along with my ALT’s.
    My primary care holds a PhD in Pathology, we both thought it is either seronegative or RA in its early stages.
    So back I went to Rheumy and this time (last week) he checked my hands and fingers and ankles. Felt some inflammation in my fingers and no other sign of any arthritis. He related every ache and pain to my fibromyalgia! I wanted to cry…
    I work in Neuroscience for pete’s sake!
    My husband sat there with me… But he decided to give me the med and if it affected my liver enzymes I will need to use TNF injections. Without saying too much, what did he say? That I do have arhtritis or ra? I told him mobic was taking away the severe throbbing in my neck from a disc lodging into my spine and all the DDD in back…
    What did he say or did not want to say? My knees, I know have arthritis from having displaced knee caps all my life. And all could say, was nothing. Pain is from fibro and only some evidence of arthritis in my hands and fingers. There is no one else to go because one can easily get blacklisted here, just for asking questions!

    Sorry, I had to vent… This is my story as it unfolds…

    Caroline

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    • April 1, 2011 at 11:24 pm
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      Caroline, that is awful – blacklisted? So you can’t change to another doctor? I feel so bad for you.

      With your education, you probably know this, but the knee problems and the DDD and your neck all of these are common with RA. I wish I knew WHY so many rheumatoligists tell patients that. There are many patients who apparently do not accept it. In case you haven’t read it, here’s a link to a post on how many RA patients have negative blood tests.

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  • April 2, 2011 at 3:52 pm
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    Yep, as I had just had to rip off a two-page corker to my newly fired cardiologist.

    I have complained of heart palpitations (PACs) since 1998, way before RA dx in 2006. In 2007, 2008 sinus tach finally shows up on my annual EKGs, then disappears.

    We recently moved to from FL to WA and I was suffering from undiagnosed iron defiency from acute hepatitis which hospitalized me in August for a medication error (another long story). My new rheumy at Virginia Mason found the anemia and a Vit D deficency. Seems you have to “work up” anemia to find out what it is and the hospital or followup primary failed to do so. I was wondering why my usually hard as rock nails suddenly all turned soft, brittle, peeling on the 8-day cross-country road trip.

    Here one month, lose power n snowstorm, don’t have good heat source, I am cold from iron deficiency, and contracted mild hypothermia and first Raynauds attack. First night, I lay down and the PACs start again, typical symptom of PACs-lying down sets them off. Finally end up in ER on Friday night, my 90 year old Father in Urgent Care for PACs too. Did an EKG and told to get a holter monitor. My insurance denied it saying it wasn’t an emergency.

    Finally put on a vasodilator a month ago for these cold cold cold fingertips from the Raynauds 3 months earlier – you have Raynauds now, get used to it. Finally go to Urgent Care who take xrays and finds bone demineralization, thus the MRIs mentioned above. The PACs stop suddenly after 2 days on the vasodilator. Hmmmmm. Do some research into the drug and its also a calcium channel blocker. Treats CAVs, or coronary artery spasms aka Prinzmetal’s angina. I have been hospitalized 2x with acute hepatitis from medication errors (more long stories) with crushing chest pain, breastbone spasms, numbness down left arm and hand, vomiting, nausea. Respond to nitroglycerin. Full workup to heart cath shows nothing, go home.

    All these symptoms are CAV symptoms, take it to my rheumy and primary, and they agree. I diagnosed MYSELF off the INTERNET with a serious heart condition.

    Go back to the cardiologist I saw for 5 minutes in Dec who did “normal” Holter monitor. Agrees, try vasodilator for six months, maybe can add in long-lasting nitrate then.

    Immediately request records as I am firing him.

    Get envelope two days ago. No 12/9 chart notes and the appt a few days ago is interspersed with the gyno notes I saw in January in his clinic. Cardio letterhead, being seen for gyno problems, not cardiology. Medications wrong, family history of heart disease (WHAT?), surgeries missing, it was a mess. Holter monitor – 47 incidents of PACs in 24 hours, not told – these are heart palpatations undetectable by stethescope. 1 narrow complex tachycardia with 157 beats per minute and I am running over a 100 right now and primary is having me track them. Frequent sinus tach.
    Okay, so its normal. But I have ins cos and doctors not believing the heart pals and you don’t tell me?

    My point is, ASK FOR ALL YOUR RECORDS, EVERY FEW MONTHS. No matter how much you like them, ASK. You will find errors everywhere. If you transfer, these errors follow you and the new doctor believes the wrong chart notes, not you, and you are written off as a liar.

    I cannot wait to see how this latest moron redoes my chart notes and if he can even produce 12/9 first chart notes.
    Sorry for the diatribe, but this is my band wagon and women tend not to be aggressive enough on this front. GET ALL YOUR RECORDS ALL THE TIME. Sorry for the shouting to get your attention! LOL Take care everyone~~Cathy

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    • April 2, 2011 at 5:43 pm
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      Sadly, I think you may be right. All of my previous rheum records that I obtained included many errors. My most recent one appears to be the same, although I don’t have all of the notes yet. I will have to send in corrections, and I have been thinknig about how the new doctor would view that “behavior.” But your point is so important: if we don’t then they compare what we say to the errors in the chart, and we look like we are the one who is “wrong” / dishonest. It sounds like we can’t win. Not giving up – just thinking about how sad this is. We just want good care…

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  • April 2, 2011 at 3:52 pm
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    I am astonished that a doctor can simply get rid of a patient like that.
    The NHS has many faults but I am certain they can’t do this. It can still be a case of finding the right doctor or consultant though, seems the same everywhere.

    Keep fighting Kelly.

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  • April 4, 2011 at 4:35 pm
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    I think I’ll just quote my daughter. “Dr. Stupidhead!” (Said with a pout) U r well rid of hm in my opinion. He was blocking ur way to wellbeing. Walk around him & move right on. we’re all behind U.

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  • April 6, 2011 at 10:38 pm
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    Hi, Kelly – I’m one of the people who knows Anne-Marie professionally. First, I’m so sorry to hear that you were treated this way. I’m interested in your and your readers’ thoughts about her comment about the doctor’s reluctance to order the test. I see this as a double-edged sword. I fully believe you have the right to ask for it. It is then your doctor’s responsibility to explain why s/he thinks it is or isn’t a good idea. If your doctor isn’t going to use the test for your clinical management (regardless of the results), then the doctor is going to see it as a waste of time. If you, after having had that conversation, still believe that the test is worthwhile, then, unfortunately, only a doctor who agrees with you and would use the results in helping to treat your disease should really order it. Now you (through no fault of your own) have a scan than may not have been done in the way that was needed – but even if it was, you don’t have the confidence in the orderer or the reader. And my impression is that – regardless of the results, your doctor wasn’t going to act on it in a way that made sense to you. My point is that your doctor seems to have had a lot going on in his or her head that influenced how you were being treated, and some honest communication on his/her part would have gone a long way.
    None of that excuses the doctor’s behavior in how you were fired. A responsible doctor should have at least said that the two of you were at an impasse, and then tried to help you find someone else (even a colleague in the same practice)

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  • April 7, 2011 at 5:31 pm
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    Hi Kelly,
    As one of the invitees at the TEDxMaastricht event last Monday I heard about your bone-scan story from ‘ePatient Dave’. Dave was one of the speakers at this great event.

    Anyway, since 2007 I’ve been helping my Dad try to beat this horrible disease, Rheumatoid Arthritis. Just thought his story might interest you.

    http://www.marshallprotocol.com/view_topic.php?id=13660

    Best to you,
    Ron

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  • May 13, 2011 at 1:33 pm
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    What…? This is unbelievable. Your doctor fired you for asking a polite question without even speaking to you? That’s crazy!

    If you have the energy, I’d suggest sending a nice letter with a copy of this post to your local physician regulating body. Or newspaper.

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    • May 13, 2011 at 2:33 pm
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      This story has been widely publicized in the epatient community. But there has been no local press. I guess I’m still “protecting” the doctor’s identity because of fear that I won’t find another doctor who will take me as a patient since I’ll be seen as a “troublemaker.” In calling local doctors, I had one tell me last week that they do not take new patients who have seen more than one rheumatologist in our area. They are trying to stop patients from changing doctors. They also say they want to read what the notes are that the previous doctors have commented on you BEFORE they accept you into the practice. I have a good paper trail which I’m correct and polite. It is “unreal” but it’s true.

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  • May 18, 2011 at 10:58 am
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    This is indeed terrible but in a way totally expected behaviour by a “doctor”. You can’t just dismiss a patient like that unless you are trully unable to help him/her. He has proven this. If he doesn’t get you, he doesn’t get RA, and he never will. My doctor is also quite confident about the advise he gives. The first thing he told me was not to believe all the things I read about RA. You see, I had my homework done and I was quite prepared. But he couldn’t catch me off the guard either. I was full of reasonable questions and knowledge about many aspects of RA. I believe an educated patient is the doctor’s biggest fear: he cannot be easily manipulated and that’s what doctors want us to be-easy pray in their hands. The message is to read between the lines of what the doctor tells us. When he/she comes up with a bunch of excuses or bypasses the issue then it is time to move on. I must admit this site was of great help to me as it covers lots of issues concerning RA and information is quite accurate. For that Kelly I thank you and keep up the great work you do for all of us.

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  • July 5, 2011 at 12:36 pm
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    You are not alone in having a doctor fire you. I have been fired twice. Once by my psychiatrist for my bipolar disorder (he didn’t believe me when I told him my new meds were doing more harm than good), and once by my PCP because I was insisting on seeing a specialist about…yup! My joint pain. Turned out in both cases, I was right! I changed psychiatrists and got on the proper meds and I have been doing well ever since and I got a new PCP who referred me to the best Rheumy in the world (it’s a shame he retired)! Sad to say, but ePatient Dave is right on all three points.

    Since those two incidents, I have taken a more proactive approach to my health and wellness. I no longer sit back and wait for doctors to figure me out. The first time nearly killed me, literally. The second time left me nearly debilitated for months. Now, I tell doctors exactly how I am when I first meet them.

    I am Alicia. I am strong, independent, and I know my body better than you ever will. As long as you respect me enough to listen to what I have to say and my view, then I will show you the same respect and listen to your view and opinion and together, we will decide the best treatment, if any. This is a partnership for my health and I am not your typical patient. I like to know the details and the test results. Let me know now if this is not something you are comfortable with and I will find a new doctor.

    Don’t be afraid, and if you are afraid, push forward anyway. Courage is not the absence of fear; it is taking action despite the fear.

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    • July 5, 2011 at 6:06 pm
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      thank you for sharing, Alicia. Personally, I do get afraid whenever I think of visiting another rheumatologist. Somehow, I’ll get thru this like you said, despite the fear. There is plenty to be afraid of, but we must try to protect ourselves & save as much of our lives as possible.

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  • August 12, 2011 at 12:34 am
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    hi i live in new zealand and i cant believe what im reading, ive had severe RA for 15 years and ive never had a fear of my doctors or what i can ask them ,they have always been amazing to me, about two yrs ago i was moved to a new doc ,thats closer to me, and she is really great im lucky to have her but i also have lung problems so i have to be careful with my meds cos of my imune system, i started on embrel about two months back ( its quite new here ) and tracey (my doc) and my RA nurse have been awsome i feel i have the whole hospital working for me to keep me going , i cant believe what you guys are put through just to get decent care and meds ,being fired by your doc well ive just never heard of that before lol, hope things get better for all you folks over there , kimmy

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  • October 22, 2011 at 8:22 am
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    I know this is an older blog, but I’m sorry this happened to you. It is upsetting, to say the least, and leaves one feeling adrift at sea with no help.

    I too have been “fired” by a rheumatologist. My first one started treatment and seem reasonable but I always saw his nurse practitioner, and he’d stick his head in at the end of every appointment. Weird, I’d thought, but I guess he trusts her and she’s good.

    Well, I’d been having difficulty with my HR department because of a missed week of work due to my first huge flare (even through I didn’t actually “miss” work; I’d worked from home a few hours every day that week). The NP agreed with me / encouraged me to finish the application process to request intermittent FMLA leave. To make a long story short, I received a letter from their office not long after firing me. During the last appointment the NP had been very vocal about how my HR department called to verify every sick note and absence (and they had made us complete the FMLA paperwork a second time,rejecting the first set of paperwork).

    I’d read enough of your blogs to know to get my records, and I was horrified to see what she’d written prior to “firing” me: all sorts of non – factual, subjective comments . . . I didn’t even recognize the person she was writing about. And, also horrified to see that she’d called and canceled every one of my prescriptions, except my Enbril, which I had sent to a mail order pharmacy, and so she couldn’t find and cancel it. Luckily, I’d kind of felt something was up and had been in the process of getting a second opinion, so my second opinion was able to step in and monitor my care.

    Now, every doctor I see, every visit, I request doctor’s notes. My specialists (the new rheumatologist and the cardiologist) have no problem at all with it. My PCP, with whom I’ve always had a tenuous relationship, balks every time. And now that its a little in the past and not so sensitive, I’m also going to send a letter per HIPAA requiring they correct the medical note cc all my other doctors they were so kind to cc in the first place.

    Sometimes I think managing my medical care is almost as fatiguing as having RA and fibromyalgia. It certainly doesn’t make it any easier, and I know the stress makes it worse.

    I can’t say it enough, but thank you, Kelly, for having your blog — slowly but surely I’m learning how to be a better patient advocate.

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    • October 24, 2011 at 5:15 pm
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      First, no blog here is “old” since new folks find them via google & often comment or send emails.

      Second, immense thanks for putting your story here. Usually, I get such stories in private emails which I’m not able to share with others. There is so much that patients and caregivers can gain from your story.

      There are at least 3 issues here.
      1- the dishonesty of the NP with you in not telling you personally that she had a problem with your FMLA-related requests;
      2 – the inaccurate records / doctor’s notes she produced over time (which is extremely common);
      3- the vengefulness of her cancelling your scripts and then forwarding her opinion of you to other providers.

      All, even beyond the lack of concern for your health.

      I hope you also read the next post in this series which shows the evidence about the bone scan – pdf’s with the actual reports and several more references. Bottom line is that my behavior and conclusions are all correct, but I still do not have adequate care. The penalty for asking permission to ask a question has been very high. https://www.rawarrior.com/new-reading-of-the-nuclear-bone-scan-credibility-is-everything/

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      • October 24, 2011 at 6:07 pm
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        This is incredible… the other problem is— the HR department. I am finding the HR depts are creating a huge problem for employees and their docs. **I am not excusing the doctor or NP.** But— HR depts need an education too.. thank you for “bumping” this blog and leaving a comment, because as Kelly said, there is no old blog… THANK YOU!

        I keep wanting to go in and “educate” my HR dept, but, I fear a loss of job! Kim

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  • November 25, 2011 at 8:51 am
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    I just had to respond to this one… A little background info is needed for my story. I had an acute liver failure back in 2007, due to antibiotic Z-pak, mood stabilizer Depakote & antidepressant Effexor XR (evil drug!). I’m pretty sure it was Depakote, that messed the liver and Z-pak gave it the final punch. I was on the mood stabilizer because my doc was trying to wean me off of the Effexor. I had to quit cold turkey anyway, since my liver failed. (the 1st ER failed in a major way, too). Long story short, I have been very fearful of all medications since then & I’m usually very sensitive to meds to begin with.

    I was diagnosed with RA back in end of March 2011, after x-rays & more blood tests, I tried one RA medicine, Azulfidine I believe was the name of it. I followed doctors orders to build up to a daily dose of 8 pills, but I couldn’t go higher than 4 when I started feeling the effects in my tummy. She also had me try muscle relaxants. I couldn’t continue using them either, due to side effects (very vivid hallucinations).

    At that point my friend told me about a herbalist (who specializes in auto immune diseases & liver disease), her friend’s husband had contacted after western medicine had failed to treat his liver disease. He literally had 2 months to live. He basically had nothing to lose, so he followed the herbalists orders to a T with the herbs & within a month his liver had “bounced back” and after 6 months or so, he had beat liver disease! (this is over 10 years ago, and he’s still alive!) So with this story in mind, I went to see my rheumatologist & I wanted to be direct with her. I told her, I’d like to try alternative/chinese medicine for my RA (given my history with liver failure and poor response to medicine). She just about lost it! She basically fired me, saying she can no longer see me, if I choose this road. That there’s NO CURE for RA!! She also told me, my blood test results show my RA to be the most degenerative kind! I was shocked by her response. She came highly recommended from reliable sources… but I’m not your average patient, so maybe the highly recommended ones are just better with the “talk”, not the “walk”.

    I went to see the herbalist back in June 2011, and started a regimen of 4 Chinese herbs. Low and behold, they started working! I was taking ibuprofen together with them, but just once or twice a day & as the herbs were doing their thing, I was becoming more and more able to do stuff! In fact, compared to what I feel now, it was incredible… and what I mean by this, I went to get my bloodwork done (to check for my liver) and sadly my liver # were elevated… so was my blood pressure (turns out, a couple of the herbs have liqource root in them, high doses)… I’ve never had a high blood pressure. So on September 23, I stopped taking my herbs 🙁 fearful of possible liver damage & what the high blood pressure might do… and slowly from there on, I realized how much they had helped me as my condition has declined dramatically… friends have told me to go back & find out, if the herbalist has herbs that don’t have liquorice root in them, to help me. I guess I was feeling pessimistic about it & haven’t bothered… but with the disability I’m experiencing currently, I may have no choice… the herbs are $350 month & in grand scheme of things, I guess the western medicine drugs will do more damage to me, than the herbs.

    Sorry for the long story! This is the first time I actually wrote about this experience to this extent… it gave me some clarity as to what I have to do, to get up from here (literally, too). I have to go see the herbalist again. Thanks for reading 🙂

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  • December 27, 2011 at 2:08 pm
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    I have had terrible pain in the larger joints without significant swelling. I was told for three years that it was not my RA but Fibromyalgia. I just received two MRI reports showing long term damage from RA in those joints. I feel the FM diagnosis is loosely diagnosed and may create bigger problems. I have learned that I must trust my own instincts. It is my body and I will have to live with the long term effects not the doctor.

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  • October 12, 2012 at 7:24 am
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    I was fired by my doctor about a year ago. Its devastating. The person you trust with your life, in essence, says- eh, your too much work, adios! I was literally told I was too much work and taking away from his time with other patients (meanwhile has lots of appointment openings- now I see why). He also told me over and over that hip pain isn’t RA and my fibro was causing my pain. He refused to entertain moving me back up to a biologic. My new RD ordered new xrays and over the past 2 years I now have significant deterioration to my hips. At 36 that’s not “normal wear and tear”, that, my friends, is RA! Ugh, I could go on, but I wanted to relate that I literally, physically and emotionally feel your pain and wanted to pass on cyber hugs. (ps, my bone scan several years ago looked like yours except much clearer- it took much longer, and indicated “full involvement and inflammation of all major joint systems” including ribs, jaw, sternum- you name it. Good for you for pushing.

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    • October 12, 2012 at 7:31 am
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      Thanks for sharing, Meghan. I see the same stories repeated over and over and over, which has pushed me to keep going here no-matter-what and with the Rheumatoid Patient Foundation so we can hope to see things improved for future patients.

      Reply
  • October 30, 2012 at 3:55 pm
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    Honey, don’t feel too bad. I just had a bone scan and nearly every joint in my body lit up brighter than yours and they said it was unremarkable except for a sinus infection. I can’t be more irritated!!!

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  • April 9, 2015 at 4:27 pm
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    Holy cow! That is horrible. I am a radiologist and I welcome anyone to call me about their scans (though if I am in the middle of a complex case I might need to call back).

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    • October 30, 2015 at 10:51 pm
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      that’s interesting Anthony. I guess there are all kinds of people who are doctors. I’d love to talk with you more sometime.

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  • September 7, 2015 at 2:43 pm
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    I had my bone scan today. The tech told me he couldn’t see much except for some mild uptake on my ankle. My hands and feet were also scanned for only 5 mins.

    I have to wait for the official report but I’m also wondering if 5 mins is enough time? Especially if the arthritis is in the early stages.

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  • February 20, 2017 at 4:38 pm
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    I know this was posted several years ago, but I am hopeful that someone here can help me. I just had a bone scan and the report is disturbing how wrong it is. There’s even a description of comparison of my wrists between 2 images, but one of the images doesn’t include my wrists at all! I would appreciate any information on finding an independent radiologist to reread my scans for me. Thank you for any help at all!

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    • February 20, 2017 at 7:01 pm
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      Nicole, I’m not sure how to find someone where you are. I found a radiologist through a friend who knew of a company here. I suggest you look online and ask around.
      I’ll also say this in case it applies to you or someone else searching –
      I was right about my scan and about my disease activity, of course. But it didn’t really matter to anyone- I have a good doctor right now who doesn’t even look at it (because my disease activity is so obvious). But then the one who treated me badly wouldn’t look at it back then. Having the true report proved my point, but there is still always the same problem – to find a doctor who pays attention to the patient and responds to / treats the disease properly.

      Reply

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