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Another tour de force, Kelly. I admire deeply your ability to collect information, express feelings, write clearly and compelling, and point to why it matters. That’s what the best change agents do, and you’re tops.
Question: do we know if the original “she’s crazy” doc was notified of the finding? In my view it makes a world of difference whether a mistaken person responds to new info with “Holy cow, I’m sorry!” or stonewalls it. Anyone who stonewalls in the face of new info is no scientist – even though it’s a common situation.
If only there were a list online of doctors or practices who are proficient and proactive in the use of MSUS for folks like us, so that they could receive more patients, and so that those who do not could be embarassed and avoided. And hopefully change.
Hi Tom,
I love your idea of a list by state of those who provide MSUS or advanced imaging. I wonder if this suggestion is in the works or if people are needed to help this become a reality.
I hope people will become members and volunteer with the Rheumatoid Patient Foundation. I also encourage people to help achieve the goal of having advanced imaging be the “standard of care” in rheumatology. I just posted on actions that can be taken from my perspective.
North America has a long way to go to have advanced imaging become the standard of care. We are far behind Europe with this practice. Frankly, I’m tired of hearing the poor treatment of people with RA and want to help bring about positive change.
Thank you Kelly for staying active and pushing for reform in all aspects of Rheumatoid Arthritis diagnosing and treatment. Dave above makes some excellent points. I am RH negative and have been brushed off by so many doctors over the years that currently I am not seeing any doctors for the treatment of my RA. I have been dismissed by RA doctors since I don’t show the typical blood work responses; MRI’s and Xrays. Having said this, I find it interesting that when I consulted with a shoulder specialist for Rotator cuff tear he immediately noted through his Xray and later ultrasound tests that I had severe bone erosion on both my shoulders and feet all typical of RA! Funny how this isn’t even his specialty!
Thanks Kelly for a wonderful 3-part series. It looks like you and I are equally passionate about raising awareness of the critical importance of power doppler ultrasound and MRI in rheumatology care. I’m glad the American College of Rheumatology has courses for rheumatologists and sessions at the upcoming ACR Conference on advanced imaging. There are several things people with RA can do to help move rheumatology to accept advanced imaging as the “standard of care”.
1) As awareness is increased among us, it is sooooooo important that each person ASK their rheumatologist for a power doppler ultrasound or MRI of at least both hands and feet or if you have a joint that is particularly concerning, mention that, also.
Hands and feet are the two recommended minimum areas for imaging in the published literature on ultrasound. WE have to advocate for the best diagnostic tests available. People with the conditions or disabilities are the ones to change the face of treatment and improve their own lives. So, even if your rheumatologist says “no” we don’t have that or I don’t believe in that or whatever……….. the question has been asked, the awareness has been raised of this need BY PEOPLE WITH RA who want good treatment. Everyone should be sick and tired of being questioned about if their joints are really swollen or not, if their joints really hurt or not when objective tests exist to PROVE the disease activity in the joints. X-rays do NOT show inflammation and only show damage several years after damage has occurred. DON’T SETTLE FOR POOR TREATMENT !!!
2) Join the Rheumatoid Patient Foundation and volunteer to help with ongoing initiatives to improve rheumatology care http://rheum4us.org/
3) Write to the American College of Rheumatology or other professional association of rheumatologists thanking them for their training opportunities for rheumatologists and their courses on MSUS. Ask that advanced imaging become the “standard of care” in rheumatology. Ask where you can have the imaging done in your state or province. I can provide you a sample letter if you’d like just personal message me.
4) Share the information Kelly is providing on RA Warrior with your contacts in the rheumatology community.
5) Print out the extensive references we’ve posted about MRI and power doppler ultrasound and share these references with your rheumatologist. The references are available on Kelly’s posts or on the comments section by others who post. I can send my own references to those who would like.
Thanks for the link to the NEJM article on good and difficult patients. As someone who has been in both the role of health care worker but also been in the role of a “difficult” patient, I found this a wonderful article.
Great series of articles and the comments as well! Thank you.
I may have missed this – but what is the protocol for xrays, u/s, mri or whatever. My first rheum did xrays on my hands once a year. Current rheum has never made one xray or anything else in over 2 years.
Thanks
Thank you Kelly, for all the current info you keep pointing out to us. Because you mentioned it (maybe last year?), I knew on my first visit that my rheumatologist might be a keeper. He did look at my labs, did squeeze my joints etc. but he also did ultrasound of my hand joints. He took the most normal looking joints and pointed out what the structures are, then looked at the ring fingers which are noticeably deformed, and pointed out the difference. It looks like there is a storm in the ring finger joints. So I didn’t have any questioning of my sanity or symptoms, or a delay in treatment.
I think this helped me to be a better patient, along with the wealth of other info you put up here. And by “good patient” I mean not submissive or doing whatever the doctor says, I mean communicating clearly, paying attention to the treatment plan and taking the meds correctly, while letting the doc know what’s good and not good so the treatment plan can change if needed.
It’s taken a chronic disease to make me into a little more assertive patient, and I am thoroughly grateful for the community of patients that share their experiences.
I have to admit I was skeptical when my rheumatologist starting using ultrasound on every visit (every 3 months). I thought this might be simply another way for him to increase his billing fee. (I still feel this way somewhat about Dexa scans.) But my experience is now that the ultrasound correlates with the way I am feeling the rheumatoid disease better than any other diagnostic I’ve had in my many years of having RA. My rheumatologist has been able to adjust my medication (Cimzia + methotrexate) to the minimum level that keeps me relatively comfortable.
I just saw this article about musculoskeletal knowledge in rheumatologists and fellows and is rather discouraging. http://www.mdlinx.com/rheumatology/news-article.cfm/4798080/clinical-anatomy-anatomical-knowledge-rheumatology-fellows
Your call for training is right on the money. If anyone knew MSK anatomy I would have expected it of them
Annette