Does anyone understand this? I am so hurt and so angry that I would file a lawsuit if I knew I had a case and thought it would do any good. Not a lawsuit based on money mind you....a lawsuit based on principle.
During my time with my EX-RD I participated in a 2 year study that he highly recommended. I had 4 sets of x-rays done on my hands, wrists, ankles and feet during the study. Each time the x-rays were done the RD reported normal all the way down the list and no erosions. While I was very surprised that the x-rays were normal with no erosions as my RA was never under control, I was happy as it was great news. When the study ended the RD took me off all drugs for almost 2 months awaiting results from the study to see what I had been on and what was placebo. Although I thought it was crazy to take me off of everything I did what my RD told me like a good little patient. During that time I went into severe flares with the worst being in my knees leaving me unable to walk. The pain in my knees has never gone away even though I am back on a crap load of medications. I told my RD this and requested x-rays of my knees and an MRI. He declined stating that people always show damage in their hands and feet first and that even if there was damage it would not change the course of treatment. WHAT?! My knees hurt every day and the course of treatment that I'm on is the same that I've been on for over two years...when do you clue in that it ISN'T WORKING? Does the treatment help? I believe it helps, but it is in no way controlling my RA. This was where I finally pulled my head out and made the choice to change doctors and I'm glad I did.
At my first visit with the new RD, she did a full set of x-rays and labwork. At my appointment 2 weeks later we reviewed the results which left me angry and hurt. There is damage in my hands, wrists, feet, ankles and knees. I almost fell off my chair. I knew there would be damage in my knees but I was shocked to say the least when she started listing all the damage to the parts that I've been told for 2 years were fine and had NO damage. Because of the results of my knee x-rays and the pain I'm experiencing she also ordered an MRI which I had done last Thursday. We will have those results on the 27th. She also feels that the course of treatment DOES need to be changed as I've been on it for over 2 years and have little improvement and I will be switching from Enbrel to Remicaide once it is appoved by my insurance.
Anyhow, I just don't understand all this. Did he not look at the x-rays? Did he falsely report due to something with the study? Is he just incompetent? Did he really lie straight to my face? I just don't get it...how do you do that to someone? If it was once I might say they made a mistake but 4 sets of x-rays...it's just not right.
I'm very emotional and angry about this. I feel like this doctor caused me unnecessary damage that we might have been able to do something about. Not only do I have damage that I was told I didn't, I can't walk without pain now...it just seems crazy to me. I so wanted to go to his office and punch him right in the nose. I am thankful about one thing though...I'm thankful that I finally went with my instincts and found another doctor.
What do you all think? How would feel and what would you do?
Peace & Love...Neasy
WOW!!!!!!! Neasy it sound terrible. My heart goes out to you.
I would be pissed, angree, hurt.... I am glad you found another RD but sorry that you were misled or misinformed at the very least.
I have no idea about the legalities of any of it but someone will.
I think I would post the RD's name and location (state) so a future patient might be foreworned.
Sounds like he has some shady prctices. I'd look in to see if he's had any former complaints, and or lawsuits brought against him. Sorry about the exray outcome but at least now you can get started on something that works for you and hopefully put any more deteroration at halt.Neasy, I'm so sorry that the news wasn't better. Once I calmed down I would insist on a complete copy of my records from the study and from his practice. Most likely there are 2 files, a study file and a practice file. I'd take those to your new RD and have her review them. Then it's up to you on how you want to either proceed or forget. Your medical files belong to you. MaryB can give you some good advice about acquiring your medical files. I can't tell you why he told you what he did but I do know that I'd want to have those medical records reviewed. It's a possiblity that what he's reporting to the study isn't accurate and the study may be skewed because of his inaccurate reporting. If you find out that the xrays were falsely reported then you can report the findings to the study center. LindyOMG, what is with some of these doctors?? I wonder if he was getting some sort of compensation from the drug study company to report "good" findings?????Neasy I am so sorry that this has happened. I'm glad you are now on track with a new RD and I hope that soon you will be on a treatment program that has you feeling better.
I have no idea about the legality of all of this. Do you have papers that you signed when you entered the study, which in anyway limit the doctor's liability? Do you know who he was working for in conducting the study - was it a university, a private company, etc.? That may give you a better indication of what his motives were. I would also ask for a copy of any published reports on the results of this study.
Before you take any action you need to fully educate yourself on this study. Collect as much data as you can, and then you can speak with an attorney who specializes in medical law for an opinion. If you can prove where he has violated his medical oath of "do no harm", then I would report him to the AMA, and any medical journals, etc. where he has published the results of his study.
Neasy, I am so sorry this happened to you! It's incredible that a specialist had you in a trial and didn't go over the x-rays, bloodwork, and meds, each time you were in for an appointment. I find that completely inexcusable.
Then telling you there was no damage? It sounds like he never bothered to read the x-rays, or he didn't know how to read them. I agree that, after 4 sets of x-rays, he should have been able to see something.
I am so glad you finally went to another RD. At least she sounds like she wants to help you. I really hope there hasn't been too much damage done!
I don't blame you in the least, for being upset and angry. I am not the type of person who thinks of a lawsuit in answer to everything, but I think you need to at least talk to a lawyer. I know that is going to add even more stress, but this guy could be doing the same thing to all his patients. I wonder if it had anything to do with the trial you were in, like you said? If he falsely reported information, a lot of people could eventually be getting potentially harmful medication or treatment.
I am so very sorry you are having such pain, now. I hope your new doctor can help you.
I don't know if the first doctor was incompetent or a liar, but it seems like he was more interested in the outcome of the study than in your outcome.
I hope the new doctor starts to treat you as you should have been all along. Please let us know the outcome. Hope you start to feel better very soon.
Hugs, Nini
Can you get the records from the previous quack, so that your new doctor can compare them? It might help to pinpoint how rapidly the damage has occured.
Did you ask the new doctor if there's a chance this damage happened after the original x-rays were taken? I know that damage can occur fairly quickly. I'd definately get all of your records (especially x-rays) from your old doctor and have your new doctor review them and go from there.
I'm sorry this is happening; but I'm happy to hear you have a new doctor that seems to be more on top of things. Best of luck to you.
I am sorry, Neasy. That is extremely appalling and I feel really terrible for you! The last thingNeasy, this just sucks, no other way to put it. I can't believe he would knowingly do something so wrong. I don't blame you for being angry, I got angry just reading your post. It might be a good idea to get copies and go from there once you've calmed some. I'm really glad you left him and found another rheumy. I hope you are able to get things under control with the remicade.
Hillhone has some excellent advice. Studies are supposed to have very specific protocals. You need to get your complete medical record including copies of any x'rays that were taken and have them reviewed by your new doctor. If this was a University based study there should be an office overseeing the study. If it is part of a private company study there is a coordinator at the corporate level. But you absolutly need ot get a copy of the study protocal to find out what the rules were. What med were you on a study for? Did yo uever find out if you were on placebo or the real stuff?
The FDA covers studies at a National level
Wow. That's shocking. I'm really sorry.' Not being able to sleep is a pain Neasy
This post was for Janie
This is for you Neasy. Sorry your having a hard time about the study or incompetence of a study I should say. Hope things get worked out soon and the damage can be stopped soon. I dread going to the Dr. on the 29th for this very reason
Wow, Neasy. This is terrible. First there are Federal laws regarding research on humans (45CFR46) and there should be a review committee called the "Institutional Review Board" (IRB) that have special rules for whatever university or hospital it was being performed at. http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm&n bsp;Neasy, I fully understand where you are coming from. It took 7 years for me to be diagnosed and in that time I had 2 total knee replacements and have bad erosion in my left wrist. I was angry too that it took so many doctors to get a diagnosis. GP's (3) said it was Osteo and 'live with it'. Orthopedic Surgeons (4) said it was Osteo and couldn't explain the heat, reddness and severe pain and inflammation. Rheumy (1) said my blood work was OK so it wasn't anything serious. Finally I took myself to another surgeon who took x-rays and said I needed a knee replacement. Found the best surgeon and had him do the knee replacement he said it was NOT Osteo and there was something VERY angry and inflammatory going on. That all happened in 2 years.
Five years later I finally got a GP to send me to a new Rheumy who instantly diagnosed sero-negative RA.
I might have saved my knees if someone had investigated further years ago. I might not have the damage to my wrist and other joints if someone had taken me seriously and if I had stood my ground.
I would definitely demand ALL of your medical records from Doctor Bozo and read them through and make a decision about where you want to go from here. Take Mary up on her offer of assistance. Even if you don't proceed with a suit you need to follow through and be satisfied in yourself that you have done everything you need to do for you to put this to bed and get on with getting better.
Pam
I agree with you Buckeye that the original films should be read by someone else. But most docs only look at the report from the Radiologist. Maybe the Radiologist was negligent and didn't read them correctly. But if the Radiologist did report the damage and the RD just pooh-poohed them that would be even worse (if possible) Neasy, it's late and I've taken my sleeping pill so I don't know if I'll make much sense. We have two labs here. At the first lab the Dr. who reads the images gives the results in one sentence. Maybe two if I'm lucky. At the second lab the Dr. gives a very detailed report and explains everything. I'm not going to the first lab anymore because something is wrong there. My RD diagnosed me after reading the results of my MRI from the second lab. The first lab took my x-rays and said "no damages or changes". I clearly had erosions. I don't know if this makes any difference in your case or not. I'm sorry you've had to go through this. I'm thinking about you. How are you doing today Neasy? You're in my thoughts! I was asked to do a study but I lived so far out in the country they changed their minds. You sure put a different look on studys. Hang in there and don't let your upset flare you up - I know that one by experience
Take care, Karin
It makes me feel sick.
I have a hard time believing they would lie to you about damage on x-ray. (It stands to reason that you might have an xray taken that was not under their control (a car accident or a fall) , and find out about the lying.
It makes me feel worse that they could be so incompetent.
I am so sorry neasy.