New Reading of the Nuclear Bone Scan: Credibility is Everything
Today, I got a gift. A friend obtained a second reading of my nuclear bone scan. The 4-page report was sent to me in a PDF as an authorized second opinion.
The radiologist did not agree with the findings of the first report and the differences were not subtle. Instead of quoting it at length, I’ve decided to reproduce the report here for you, removing anything which identifies the doctors. Also included on that PDF is the original report from the first so-called reading of the scan.
The new radiologist agreed that the times for my scans were short, producing lower quality images. This raises questions regarding insurance payment for the scans and the matter of what my scans would look like if they’d been performed correctly.
Credibility, timing, and nuclear bone scans
So many important issues are raised by what has happened to me in the last few weeks. One of them is the nature of the relationship between patients and doctors. Trust and credibility are essential elements.
I spoke with a friend yesterday who disagrees with her current doctor about something significant. She worries that she might need to find another doctor, repeatedly saying she feels too “fragile” to go through that process. Having experienced Doc Space Heater and Dr. DIP and others who either told me that “I don’t look like I have RA” or that my fickle CRP proves I’m in remission, I knew exactly what she meant.
How do you prove that you can’t put your arms over your head if a doctor says, “You’re not trying hard enough,” as has been said to children suffering with JRA?
How do you prove daily fevers, joint pain, and fatigue if the doctor doubts you?
Why do we have to bring photos of swelling? Why isn’t it trusted when we describe it?
How do you answer a new doctor who calls your DMARDs unnecessary? Read Ann’s answers to that – she’s one of my heroes in this.
One thing I’m doing to prepare myself for this process is re-reading Elizabeth Cohen’s book The Empowered Patient. I’ll report on what I learn and how I use it. The image is a quote from chapter one.
Bonus nuclear bone scan link: Nuclear bone scans can be done in 2 or 3 phases to demonstrate clear distinctions between RA, gout, and OA. Timing appears to be very important in the nuclear bone scan process. Thanks to an empowered patient who educated me about these methods.
Important: I am grateful for supporting prayers. Like most people with RA, I’m dealing with other health problems. Dealing with this bone scan and finding a good rheumatologist are high priorities. The timing was not good: I had to go to Jacksonville, speak publicly, and fulfill other commitments while keeping this “secret.” There are some big things just round the corner; and I want you to know that I’m okay. This is not consuming me. I trust that God will work it for the best.
Recommended reading
- Some Rheumatologists Don’t Understand How Much It Hurts
- Alice Goes to Jacksonville: Mayo Clinic Center for Social Media
- My Doctor Fired Me (the result of the request for a 2nd opinion on the scan)
- Other posts tagged nuclear bone scan
Hi Kelly,
Hope that you do find a good rheum doc soon…will continue to pray for you. 🙂
Keep hanging in there, friend…God bless always. 🙂
First, let me tell you how wonderful it was for you to pursue this. Even an untrained eye can tell at a glance that something is going on. “Unremarkable?,” I think not. Good on you for the second opinion. Not so good about the results, but at least now, your body and your scans are in sync. Thank-you for sharing. It’s a good lesson for all. If something stinks in Denmark go to Germany. (excuse me for slaughtering that old expression 🙂 )
Good work, Kelly.
I need to remember when I go to the doctor that it doesn’t matter if she/he likes me. That’s hard for me to deal with. I am very fortunate though because I have an awesome Rheumatologist who is very understanding and when I tell her I’m frustrated because I can’t do something, she listens and we try to figure out ways to be able to do it again.
Kelly, I am SO glad you finally found someone who would read the scans and do a qualified assessment. I am relieved. When I read your tweet yesterday stating you got positive news, I swear I felt light with relief. If I felt that, I can only imagine how you are feeling.
Kelly,
As always, you lead the way to “patient empowerment” for so many RA and JRA patients. We trust you, we thank you, and we wish you much strength to keep doing what you’re doing! We’re hoping that all your “pain” (mental and physical” will get some relief soon! We’re with you on your battles, as you are with all of us in ours!
WOW – what a difference! It’s like hearing a book reviewer say, “Yes, I’ve read this book… it has a whole lot of pages and has been translated into many different languages… but other than that, it is unremarkable.” And then you find that he is talking about the Bible! So much more could have been said!!!
I think you should forward the results to your old rheumy. I wonder if you would get a response.
Hi Kelly
I have to say for once I’m absolutely speechless (though you know that won’t last for long) :grin:. I’m stunned – not because of your second opinion – because actually taking all of the 10 seconds (if that) to read the absolutely ‘NOTHING’ first ‘opinion’ offered it is not worth the paper it’s written on!!
I know you said that it showed no evidence of RA, but I had presumed that it would have at least detailed specific parts of your skeleton with some sort of comment (incorrect as it might have been). I think that your first scan report should be referred to as an unreported scan – because that is what it was. I have NEVER seen a ‘report’ as brief as that – EVER and whilst I’m not an expert on scans or x-rays, I would hope that after 27 years of nursing in almost all specialiities at some time (except Coronary Care and ironically Rheumatology) that I had a tincy wincy bit of knowledge more than many of my non nurse friends.
To read the second opinion – well it more than validates what you already know personally to say the least. I would imagine that although you know how and what you feel, and have done from the beginning, to have it validated by such a great report and to add to your records for any other ‘doubters’ out there that you might come into contact with is extremely valuable.
Also the fact that it highlights C1/2 as requiring further scan as well as your foot with the possibility of a stress fracture gives you something to follow up with.
I am so pleased for you Kelly – you have the courage of a lion, many would have just not pursued it, and understandably so.
The one thing that bothers me is how many others with serious illnesses and abnormalities, could be forever affected when their scans are reported on by this ‘radiologist’.
There really was no doubt about this. The doc never looked at the scan and just dismissed it because it was patient requested. Not much partnership in care there. Sooner or later the lack of partnership would have come forward, whether it was during this procedure or something else that may have been needed in your care. In the long run you will be far better off.
Thought my head was going to explode when I read the reports. I am beyond aggravated and disgusted. This, my friend, is why I never bother getting diagnostic tests for anything. I’ve always lived to regret it — the process, the outcome, the suggested treatment. I thank and praise God for giving you the fierce ability to help others understand what it means to be an empowered patient!
It doesn’t have to be this way. I hope we can see change. It has been shocking what I’ve heard from many rheumatology patients over the last couple of years. And yet there are those examples we can point to where things do work right.
It reminds me of ordering a mocha coffee. Sometimes, they make it perfectly. But most of the time, they find a way to screw it up. Some people are meticulous & others are careless – whether they are medical professionals or baristas.
I am so glad I found your site and for the wonderful, time consuming and often very enlighening and inspiring work you do and continue to do!
I say that all docs need to take a “barista” test whereby we can read the results and determine if we want to hire them 🙂
I wonder if in their licensing process they have to take a psychological profile test? I really believe that should be done for this group. It never EVER ceases to amaze me how much damage a bad doctor can do…just never ceases to amaze me.
I hope you find the best doc out there…you deserve it! Truly.
I’ve always compared doctors to mechanics. Even if you have a chevy and go to a chevy dealer to get your car fixed, they can botch it and you can find yourself broken down on the side of the road after having paid more than you can afford. There are also these “shade tree mechanics” who aren’t really easy to find who do absolutely perfect work cheaply.
I’m glad you got a second opinion. I’m not glad you HAVE damage, but I’m glad they recognized it. I think I’d email that to my old dr if I were you.
Kelly – I’ve been following your posts regarding the initial results of your bone scan and the subsequent second opinion. First, I am proud of you for pursuing this and for rejecting the flawed first analysis. And secondly, I am just downright angry that you had to go through this entire ordeal. It is yet another example to add to the long list of frustrations that those of us with RA (as well as other autoimmune disease processes) must endure. You already know some of my story, but for those who do not, I went through a long period of misdiagnoses caused by so called “normal” test results (I am seronegative). I am thankful to have found an excellent rheumy who treats me aggressively despite my seronegative status. My wish for you is that you can quickly find “Dr. Right”.
Based on your recommendation, I have read Elizabeth Cohen’s “The Empowered Patient”. I think it is absolutely required reading for those of us who have found ourselves in the position of being “professional patients”. While I wouldn’t go so far as to say that I have a fundamental mistrust of our healthcare system (insurance, yes; otherwise, no), I will say that it is critical for us to be strong advocates for ourselves and our health. This includes researching our own conditions, asking questions of our physicians and openly questioning results of diagnoses that we don’t understand or that we believe may be flawed.
Thanks again Kelly for your service to our community!
Im so very happy that you were finally able to get someone to take another look! I can’t believe they missed all that the first go-round! I hope you can make some more progress in light of the test results 🙂
Kelly I am so very happy for you. It makes me wonder about my bone scan I had in Aug 2010. I have a short report. I am going to try to get a copy of the bone scan as soon as I feel like it. Pain is too great right now.
Thank you for this info.. You help me so much. I am so glad to have this site.
Good for you, Kelly! I’m relieved that you got a real reading. I’m also glad that you are at peace. I still feel very angry though. I just can’t wrap my head around what kind of person it takes, first to dismiss you when you asked about it, and 2’nd to “fire” you. My question is: do you think they purposely skipped part of the scan, and also meant to be dismissive? Or do you think they are just incompetent enough to not know how long the scan should be, and simply missed what the 2’nd read found?
Dear Kelly,
I decided one way I could ‘measure’ my rheum doc was to ask him about the bone scan and RA. Here is a paraphrased record of our conversation:
Me: Do you ever order a bone scan to look for inflammation and or the presence of RA?
Doc: Of course. It can be a very useful tool in diagnosis.
Me: Would you order a bone scan just because I wanted one?
Doc: Our job is to serve our patients. Too many doctors have a “God Fix” and don’t interact well with their patients. Bone scan is not often indicated, but when it is, I will order it and will if the patient has reasons for wanting it.
I told him how you were fired, and he was sad about that.
I’m sorry that this excellent physician lives 3,000 miles away from you. I pray there are more like him in FL.
Phyllis
Phyllis, Thank you. I love this!
Kelly, I would send a copy to that Dr’s office to be included in your file. Otherwise you will also run the risk of another medical professional whom you may have to have a copy of your record released to, reading that and possibly putting more credence in that report than there should be. That really makes me angry. We have enough problems trying to “prove” to people that this malarky is not all in our heads! We don’t need someone who is supposed to be a “professional” being condescending when we feel there is something else wrong. These are after all, our bodies. We have lived with them for many years(46 in my case) longer than they have been in any kind of close proximity to us, so HELLO!!!??? I know my body!! LISTEN TO ME and not what you think your medical book may or may not say! GRRR!!! I’m so glad you were able to have a another opinion. This can be so frustrating.
Well Gee, the first radiologist was reading for bone cancer? What? No wonder all the scans are normal! I’m sorry – I’m having trouble getting my palm off of my forehead. I guess I really didn’t comprehend just how bad it was. Clearly, there was NO attempt made to utilize this test in any way by your original Dr. or the original radiologist. I’m so glad you found a qualified radiologist to read it and I hope you can find a good rheumy to act on it.
Thanks, Leslie. Yes, I’m glad I decided to share the reports. I said in the blog last week that I could tell he was only checking for cancer, but this makes it obvious to all.
I’m so glad we found a competant radioligist.
I really shouldn’t be so shocked, but I am. The same way that everyone else is- not surprised by the accurate reading but by the lack of reading from the first report. It does sound to me like he was looking for bone cancer and not RA, but even then, wouldn’t a good radiologist have mentioned that??? I think also that it may be a case where doc didn’t want to be bothered, told the radiologist that he didn’t want to do it, so they both just blew it off. I can’t wait until you find a really good rheumy that isn’t intimidated by having an intelligent, knowledgeable patient!
Hi! So, in fairness to the ordering person (I’m an RN, too! Must be a risk factor for RA! :)) the first report says: “Indication: Rheumatoid Arthritis.” This means that the person ordering the test did clue in the reading physician of the reason for the test and what he/she would be looking for. My 1st Rheum. ordered a bone scan on me and I waited a month before going to have it done; it has not been determined to be the best test out there for identifying inflammation. He ordered mine saying, “Heaven forbid you have metastasis of cancer!” It was a waste of money, time, etc. My father and his sister had severe RA so it was a no-brainer. After getting no medical treatment for the first 8 months of progressively worsening symptoms, I was referred to a Rheum that is a good fit. Hope you can find a good Rheum. soon, Kelly. There is a real shortage of these Dr’s. and I’ve seen them be very picky with the patients they’ll accept. Their reasons vary but it is not uncommon.
Margery,
Yes, as I wrote, the techs and the radiologists all knew that I have RA. I made sure of it. And that my rheum was ordering the test for rheum purposes.
I find the second report extremely useful as I pursue the right treatments, especially with regard to my feet and neck. I’m also worried about what was missed by the poor image quality since the scan times were less than half of optimal. Several patients have written to me about having had useful scans – some have even shared their reports. I wonder what a different radiologist would find on yours. Since progresssion & damage continues for me in every single joint, with no treatments (even prednisone) having helped me, I’m going to try to continue to learn about what kind of tests might be needed to help me recognize which specialists I may need to see to protect my health as much as possible. Cardiology is another big one after joint destruction…
I still don’t understand what you hoped to get from this test that you and your RD didn’t already know?
All of the details that are in the 2nd opinion that I just mentioned to Margery above such as my cervical spine and feet and much more. And all of the data that’s missing from it because the camera times were less than half of what they are supposed to be. The pdf attached to the first post shows how it’s used by some rheumatologists – here’s the link. There are also numerous comments that answer this question on the other post and tell about how useful the scans can be to doctors and patients. I’ll put some links here that I think are good and might help you with this – click here and here and here and here and especially here.
You said that you had a plan you had agreed to with your doctor that involved waiting for some new treatments to become available. Wouldn’t the test have been more appropriately done at that time?
To Joey, and all those who question why Kelly’s scan was even ordered,
I don’t mean to speak for Kelly, and Kelly please correct me if I’m wrong. I believe that, if you were to know Kelly’s personal history from reading her blog, you would realize why it was important for Kelly to obtain this scan, and it would hopefully put this issue to bed. Kelly’s disease has not had the “usual” markers of inflammation associated with RA, including in the bloodwork and in physical appearance. As a result, she has had to struggle with others’ disbelief that there is some sort of disease process present. These “others” have included acquaintances, family members, and even medical doctors. The doubts of others weighed heavy on her, even though she knew, from her body’s symptoms and signals, that there was indeed a disease process at work. Furthermore, the medications and treatments she was given had not been effective in helping her painful symptoms. Therefore, when she learned of this scan and researched it and talked with others about it, she saw it as a tool that could be used to confirm what she and her body knew, but others doubted, and to complete another piece of the puzzle so that it might lead to more answers and more effective treatment for her. I know that, if I were her, I would want to have this test, if only for my peace of mind. And let me tell you, with this disease that is so complex and so personally draining, peace of mind is a very valuable thing.
I truly hope that this helps you and others understand a bit better. RA is not only a medical disorder with scientific underpinnings; it is an extremely personal disease with deeply personal implications. Thanks for listening.
Very good explanation Barbara, I agree 100%, as one who doesn’t always show obvious symptoms, like swelling. I do have fever everyday and fatigue and joint pain.
Wow! That’s a HUGE difference in reading. I hope you have somone at your insurance company working on this and send copies of both report to your insurance company as ammunition as to why payment should be denied for the first radiologist’s “reading” of your scan. It’s fraudulent for the radiologist to bill for a reading that wasn’t actually done – they just fabricated a report. My insurance company as a way to report suspected fraud. Your tip-off could even have them combing back over all other RA scans since from what your former rheumy said, I’d guess that all patients’ readings have been done just as carefully. With any luck, future patients won’t have to face this nightmare.
Hang in there. There are good doctors out there!
Warm,
Thank you for getting it. I don’t think I ever spelled it out since I want people to make their own conclusions, but this seems clear as day to me. If ALL the tests are coming back with that same “negative” report I got (which was clearly a non-report), then there is something fishy about that. What are the odds that none of those RA patients actually had inflammation show up? I wish there were a way to see all those scans & know how many patients were given that same “fraudulent” report, as you suspect. And why didn’t anyone ever ask any questions about that? I’ll bring all this up with insurance to see whether they are interested in getting to the bottom of that.
Kelly so glad you had an accurate re-read! Bless whoever helped you out with this. Does the scan show inflammation in larger joints such as, shoulders, knees, elbows, hips? Sorry, I probably missed something.
I’m so glad you were able to get a proper reading of your scan results. I am in the middle of a flare at the moment and have just been booked (without my knowledge really and not by my rheum but another doctor who doubts my diagnosis) for a nuclear bone scan this Friday. I am going to have it but am so worried now that the measures we are taking to bring the flare under control (had a big intramuscular steroid injection today) will mess with the results and somehow “prove” to this other doc that I don’t have RA. Your site is giving me heaps of information and I am so grateful for all the work you are putting in to getting this stuff out there for all of us.
Ali, re-schedule the bone scan for some future point then. You don’t have to do it right away and can tell the doc that you just had that treatment done and think it might affect the results. Also, get a copy of the order before you go to see specifically how it was ordered and make sure you don’t run into the same problems Kelly did.
I have been dealing with being diagnosed with RA for two years. I have had four high Rheumatoid Factor tests and have gone to numerous doctors. The problem is all other tests are negative. The current doctor ordered a bone scan, and the last thing they did was my elbows and hands. I looked up and saw dark spots on my elbows and wrists, but when I got a copy of the report they weren’t even mentioned. You would assume they were all right, but I called because I thought it should have stated they were unremarkable. Sure enough, the radiologist had not read that part of the test, and an addendum was added to the report. Can you imagine if I hadn’t called. The hands are the one part of the body they look at. I waited weeks to see the doctor, and he hadn’t even looked at the bone scan. I am anti-CCP negative, but RF positive. I have had no significant inflammation, but pain all over. I feel like a ticking time bomb. Everything I read says the sooner you receive treatment the better the outcome, but try getting diagnosed early in the disease. Is anyone else anti-CCP negative?
Brenda
Hi Brenda, I was weakly ccp positive when I first felt the RA. My rheumy’s tests revealed that I am seronegative and after I began taking sulfazine, I have been negative ccp ever since. My rheumy is well aware that many people have negative blood results, but have proof in xrays and physical examination. My doc always feels my joints at every exam. The exams include the questions he asked at the initial exam. I just got a copy of my chart which includes the joints affected. Even though he has never told me officially that my feet are involved, he had marked the toe joints he has felt were altered.
Kelly I am deeply offended by the first reading of your scan. It was clear that the doc should have been reading for RA. My mother was a med tech. If she read blood but noticed something else present that was not included in the suspected in the original order, she ALWAYS! read the blood further. If the original order was incorrect, she would personally take hold of the order and work the blood until she had an answer. She would speak with the doc about her findings and insist the treatment be altered to respect the blood findings regardless of what the soc thought and never saved his ego. She saved many lives believe me. It is the duty of all medical personnel to be investigators. Lives depend on their work ethic. I know most do work and leave no stone unturned, but sadly do not.
Did you know that patients accurately diagnose themselves 65% of the time? In my view, if the patient feels it,believe it!! You may not know exactly what the cause is but there is a diagnosis. Just like the earth IS round not flat.
Hi. What a great post. I love the image with the three golden rules. I wonder if I could use it? I don’t have RA but my sister-in-law was recently diagnosed, so I came over to read a little. I have fibro and CFS & much of what I’ve read on your site resonates with me. Esp., the part about learning how to communicate with doctors. Every time I think I’ve become quite good at talking to them, one throws me for a loop and I feel like I have to start all over. Very frustrating.
Thanks for the post. I’ll check back here (if I can find my way back that is) to see if that image is okay to use.
Peace and well wishes.
Thanks for visiting. If you borrow the image, please make sure it links to this page and mentions Elizabeth Cohen. Good luck to you and your sister-in-law.
I cannot beleive the difference between the two interpretations! Somebody needs to pull that first doctors license!
So glad you are so open about all this. I’m kind of scared to see the RA doctor. But I’m going to read the book you mentioned. I will be ready. I’m going Sept 14.
Just take one day at a time, Jane. Try not to let it overwhelm you.
Hi Kelly. I have a question–but I don’t at all mean for it to be patronizing, critical, or doubting in ANY way. I ask for informational purposes, as someone who may be getting a bone scan to help diagnose RA.
Why did you get the bone scan if you already had been diagnosed with RA? Was it to monitor further damage?
Thanks in advance.
Dear Amanda, I’ve answered this question in several places, here and elsewhere – I’m trying to not miss a plane – so if it’s ok I’ll put a couple links here you can read and refer you there –
First, the links & comments in this post – disease activity needs to be monitored – and there were important things learned from my scan – off the top of my head: the inflammation in my c1-c2 joint – I knew of it but had not had any medical evidence so it and it had not ever been examined – read what the report says about it – that further monitoring / treatment is needed. I have had problems with it for a decade. Never conduction studies are abnormal but not doc could say why before. There is no external swelling in a large percent of inflammation – but various scans can show it. – –
Also – the comments by several patients on the previous bone scan post – https://www.rawarrior.com/my-doctor-fired-me/ – – Here is a a link to David’s because its the best example -https://www.rawarrior.com/my-doctor-fired-me/comment-page-2/?show=comments#comment-61832 – but you should read through all of the comments because it is discussed there – even – it is an interesting discussion – there are 140 so they are on 2 pages. Also have you read the other posts about the scan? This is the link to the Tag for that in the tags list: https://www.rawarrior.com/tag/nuclear-bone-scan/. Also, there are some posts that discuss the need for monitoring RA – here’s one https://www.rawarrior.com/2-reasons-monitoring-rheumatoid-arthritis-matters/.
I hope that helps. Good luck.
First I would like to say, I am SO sorry you had a crappy initial radiologist! Part of the problem is that ANY radiologist can dictate a bone scan. As a nuclear medicine tech and RAer myself, I really believe nuclear medicine scans should only be read by nuclear medicine radiologists. Unfortunately, it’s a difficult specialty and there’re not enough of them to go around. AND, NO radiologist should ever read ANY scan only looking for one thing in particular. You read every scan as if you don’t know what may be going on. Your indication for treatment should only be used as a helpful tool when reading the images.
Timing is important when performing a bone scan but standard bone scans, in general, aren’t particularly useful for inflammation. Great for looking to see where the damage is specifically. The bone scan discussed in your link uses a radiopharmaceutical not used by most except for doing the study cited. Your tech should have also done individual pictures in addition to the wholebody. This allows for a “zoomed in” view of afflicted areas so that the doc can seem them more clearly.
All that being said, you were kinda screwed! And for that, I apologize for my commrades in radioactivity. And now, since being diagnosed with RA and having a particulary bad, self pitying day, I understand your frustration. Unfortunately, not everyone does their job to the best of their ability and those that don’t shouldn’t work in healthcare. That’s something I’ve always felt and feel even stronger about now. I cherish my chosen profession and feel rather devastated that there is a great possiblity that I may no longer be able to tolerate doing it any longer. My RA seems to be the Tower of Terror at the moment and each day has gotten harder and harder physically. I just hope that when I get to the point that I need a bone scan my tech will do for me what they would do for their loved one.
Sincerely,
Nicole
Hi Nicole, I’m not sure but it seems like you’ve just begun to read here so I want to clarify my position to you. I’m sorry about your diagnosis and I hope you respond well to treatment so you can continue working for a long time. No need to apologize at all.
The subjectivity of radiology is something that was a big surprise to me when a friend’s broken hip did not show up in the xray in 2009, leading to inappropriate physical therapy. The nuclear bone scan seems to have its own idiosyncracies technologically which were again a surprise to me. As patients, we only think black and white when it comes to tests. We also assume that the techs and docs are all experts and that the results are correct. However, in my position as an advocate, I see the errors every day because patients tell me about them just like they tell us about their successes with treatment. The only solution for any of us is to admit that we are all human and that it’s acceptable to ask questions. My doctor dismissed me for asking permission to ask a question about my scan. The suceeding blogs about that situation were not produced out of frustration, but written several weeks later after consultation with a number of medical professionals and with a purpose of illustrating what I’ve stated: that errors are possible and patients should have the abiltiy to ask reasonable questions. I feel that’s the important lesson and the reason I decided to risk sharing this story.
Hi Kelly-
I want to thank you for this site. l I have not yet been diagnosed with RA. My grandmother suffered from RA and my friend Terry suffers from it as well. My friend was diagnosed with RA when he was 30, and is now almost 60 years old. He says that early diagnosis helped slow the progression of the disease, but not stop it. The reason I am posting on this thread is due my own journey with a chronic pain disease that has eluded treatment for more than 11 years. In late September of 2001, I had complained loudly enough to my military orthopedic doctors that they ordered a full body nuclear bone scan (minus my neck and head). I was (and still am to my knowledge) seronegative for RF, CRP, ESR, and any other blood diagnostic tool they had at the time (they didn’t do anti-CCP). Nothing could explain the severe joint pain, swelling in my hands and feet, and the neck and spinal pain I was experiencing. The bone scan showed diffuse uptake in the wrists, hands, knees, SI joint, shoulders, ankles, and feet. Basically, my scan “lit up like a christmas tree”. The scan was repeated in 2004, with similar results – but showing some “improvement in the knees, SI joint, and shoulders”. Due to the seronegativity of my disease, the military doctors said the results from both scans suggested “overuse injuries”. They diagnosed me with FMS (Fibromyalgia Syndrome), plantar fasciitis, lumbosacral strain, and tendonitis. Following the diagnosis and the unremitting nature of my pain, they released me from active military service in mid-2004. I have tried NSAIDS, Lyrica, muscle relaxants, and antidepressants. My civilian Rheumy “confirmed” the military’s diagnosis 6 years ago, and told me I’d need to live with the pain. So, I do. Recently, in the middle of a flare up of my pain and symptoms (which happens often), I returned to my Rheumy, asked for new evals, and he did a few x-rays and an MRI. Two weeks prior I had been on prednisone for a week for severe allergies, and I noticed that my pain had markedly decreased. It did for me what no other meds could.
When I received the results, he again confirmed the old diagnosis (along with degenerative disc disease in the thoracic and lumbar spine). When I asked why he did not x-ray my neck and hands he responded that he felt the tests were unnecessary. He also did not run an RF or an anti-CCP (but he measured Vitamin D and B12!!). I asked him to do a full-body bone scan (I have good insurance) and to run the blood tests. He refused, prescribed massage and Lyrica, and told me “if there is no visible swelling then there is no inflammatory arthropathy, RA, or inflammatory issues of any kind”. I left dejected, frustrated, and hurt.
That evening, I found this website. I started to read the onset stories, articles, reports, responses, and everything possible on the site. THIS SITE GAVE ME HOPE. I fired my Rheumy, made an appointment with my primary care doctor, and got a new referral to a Rheumy that specializes in early detection and seronegative RA, along with other seronegative inflammatory arthropathies.
I’m not a doctor. I’m a pastor, and I believe that I was led to this site to restore my faith in the medical professionals that treat patients like me. I trust God to take care of my family and me – but I’ll admit that I had lost hope of ever finding relief. I have gone from feeling like I might be crazy and making it up in my head to feeling like there is hope for managing and controlling the pain caused by whatever disease it is that I have. My bone scan results were similar to yours (not identical, of course), and I feel like they may have overlooked the possibility of seronegative RA due to my age and level of physical conditioning (never mind that it took a week to 10 days to recover from workouts).
Thanks to you and all on this site that give me hope and confidence to take control of my health care and ask the right questions!
Blessings,
Jason
Hi Kelly, I’m struggling with what to do about my doctor. Having anxiety as to whether I should even try to find one that will treat me with respect and concern. I have already changed from one doc since moving here.
A few of my concerns are: 1. When I tell him about something that is bothering me – he always says well, why do you think that is? I was having severe pain in my rib cage on my right side, pain that brought me to tears. His only comment was – well why do you think it is hurting?
2. I asked him about the new MTX auto-injectors saying do you have patients on them and do you know how expensive they are – depending on your insurance of course. His response was: how would I know – that’s like asking me what my wife thinks about something I haven’t talked to her about.
3. He won’t explain anything to me – when I ask a question about a test, etc., he makes me feel like I’m just an ignorant woman.
4. He was giving me Voltaren Gel and I said what is it, saying what is in it that works or would help me. After all I was paying for it and it’s not cheap. His response – pointing to the wall, it’s #4 on my chart.
5. When I ask for a stronger pain med than Tramodol to take on the occasions when my pain is severe and I added I only want it for times when the pain is unbearable. His response – that’s what everyone says and laughed.
6. When I requested a handicapped parking permit for times when I just cannot get into the store, he said I guess you are going to tell me you will only use it occasionally. I said I will use it when I need it and he said – right!
7. I questioned a blood test he had ordered because I received a statement from insurance about the tests. He said Oh, this must have come in while I wasn’t here. I said well, what is it for and what does it show. He said it tells me you tested positive for Lupus – no other comments, explanations, etc. He did add Plaquenil to my other medicines.
8. I have been having problems with being sick and lost 49 lbs. I went to my PC doc and she sent me to the Gastro doc. Had the usual tests done and he found nothing and sent me back to her. She says go back to him. I mentioned this to my Rheumy saying they have no more suggestions for me. He chucked to himself and said oh they have plenty of suggestions, you just don’t want to take any of them. I promise, they have NO suggestions. I don’t like throwing up all the time and would love to ‘fix’ this.
I know if he should run across this or someone that knows him sees this, I will be fired as well.
I just feel depressed and put down when I leave there. I do think he knows what he is doing to a degree but his demeanor in treating me just isn’t comfortable. But where do I go – will the next one be even worse? How can you know if you are getting someone who really cares.
I know you have had some terrible experiences with doctors and my case doesn’t even touch yours. I’m just at a loss. Am I being too picky. Do I need to put my big girl panties on and let it roll off my back? Am I just being too sensitive.
I apologize for writing a book and thank you so much for making yourself available to listen and care. You are a wonderful person –
Nancy, many of his comments and reactions you describe are disrespectful. I have heard of it and seen it before, yes. Finding a new doctor is hard so we put up with it & we fear the next one will be worse. I can’t tell you when to draw the line, but I can tell you it looks like this jerk has already crossed it – or you would not feel so intimidated & hurt.
If it were me, I’d get whatever lab scripts or med scripts are needed and start looking for someone better. You may never find a #rheum doc who “cares” as you say, but you can find someone who will do his / her job better than this.
I have been through it as you said, and it is scary to be alone with no doc – the best thing for me was that I have kept all my other docs >10 years – because they are pretty good & it gives stability. So if possible, I recommend that you keep the same GP and OBGYN for example while you are searching for a rheum doc. They may write prescriptions or see you in the meantime, all 4 of my docs did. I also had the same pediatrician for >10 years, so that also helps me know “It wasn’t me.” Nancy, you are not a difficult or bad patient – you have a difficult disease. And a rheumatologist ought to know that. You are not to blame.
I cannot give medical advice. You asked for relationship advice, and this is only my opinion. I would start looking for someone new. You don’t need to tell his office until you are settled in a new office.
I’m a 42yo male that recently had a gallium scan from a Dr that has the reputation of finding everything or over diagnosing…..depending on who you ask. My report showed mild diffuse uptake symmetrically in ankles, knees, shoulders, wrists and elbows.
I have Hoshimotos, positive ANA and a C1q antibody. TSH is normal, but I have had joint pain and mild swelling for two years. Endocrinologist dismisses these symptoms as being related to thyroid disease. “RA” blood work is all negative.
I stopped taking the RA treatment Hydroxychloroquine and prednisone because another rheumy said all I have is hashimotos.
A few days later I over did it hauling fire wood and remembered how miserable it was before I started taking those meds. I think I’ll just diagnose myself with RA and call it good lol!
Seriously though, this is frustrating!! Can I trust the bone scan? I definitely trust my pain enough to go back on meds!!