So, I’m your 4th rheumatologist?
By Dr Irwin Lim, Rheumatologist
Not infrequently, I see a patient who’s after another opinion. Sometimes, it’s after years of seeing other rheumatologists. Sometimes, I’m not even their 2nd rheumatologist or their 3rd. I’ve been 5th choice on a number of occasions.
These consultations are always tricky and not something I look forward to.
The early thought would usually be: Is it them or us?
Sometimes, it’s because the patient’s symptoms and complaints can’t be worked out. A clear diagnosis may not be possible and discontent leads to more doctors and more opinions. This may be unavoidable.
Perhaps, it’s because the patient is “difficult”. He or she may not be able to accept their disease or they may not want the options as presented. Us doctors like to use this term, “difficult”.
Perhaps, it’s us. My colleagues may not have listened enough or asked the correct questions. Maybe we should have tried to marry our clinical goals with the needs of the patient in front of us.
I think that often it’s just a case of poor fit. I don’t get along with every patient & I know that my style would probably not work for a number of people. Must be the same for my colleagues.
By the way, I’m not offering that as an excuse not to try harder.
Rheumatologists: PLEASE give all of these patients seeking second, third, fourth or fifth opinions the benefit of the doubt unless and until they clearly prove that they are “difficult.”
I was not properly diagnosed with seronegative RA until I saw my 5th rheumatologist. As for the prior 4 doctors:
The first told me there was absolutely nothing wrong with me because my bloodwork was normal (other than a high ANA titer and signs of a Vitamin D deficiency).
The second diagnosed me with chronic fatigue even though many of my symptoms were indicative of RA. She was also the first to suggest that depression was also causing me to feel so crummy. I dutifully consulted with a psychiatrist who assured me that this was not the case at all, but the rheumatologist remained unconvinced.
The third saw the second rheumatologist’s write-up and immediately jumped on the depression bandwagon, and told me that if I didn’t also have chronic fatigue, then I must have fibromyalgia, but again did not seem to want to address the fact that I had so many other symptoms which did not fit into the depression/CFS/FMS picture.
The third rheumatologist also referred me to a fourth rheumatologist, who essentially concurred with the third rheumatologist and also told me that I should be “grateful” that I did not suffer from anything “serious.” Those were her exact words.
When I returned back to the third rheumatologist and carefully and politely expressed concern that I might not have either fibromyalgia or depression, his demeanor changed and our relationship was never the same. In his mind, I had clearly crossed into “difficult” patient territory. He stopped conducting physical exams. He stopped answering my questions. He ignored my repeated requests for help in managing the excruciating pain my swollen and inflamed hand and wrist joints were causing me. I asked for a referral to a tertiary center and he declined to provide me with one. So, I went on my own, and that is where I met rheumatologist number five, who reviewed all my records, listened to me, gave me a through physical, and finally provided the correct diagnosis. She started me on Enbrel right away and my symptoms have significantly improved in a matter of just a few weeks.
What’s perhaps the saddest thing of all is that I have heard from others with my disease who have reported similar experiences.
Tracy, I’m sorry to hear your path to diagnosis & treatment was so tortuous. Seronegative inflammatory arthritis can be very difficult to diagnose. Did any of your rheumatologists send you for either power doppler ultrasonography or MRIs of the hands/wrists to screen for synovitis & erosions?
The fifth rheumatologist sent me for x-rays first, followed by an ultrasound. None of the other four doctors ever suggested x-ray, ultrasound, or MRI.
I completely agree that seronegative RA is difficult to diagnose. But I am bothered by the fact that my experience does not seem to be unique.
Thanks for listening, Dr. Lim.
Is this in the USA? I’m interested because access to & costs of appropriate investigations is a common problem. I am fortunate to work in Sydney where accessibility is not an issue & costs have become much less of a barrier.
Yes, this is in the USA.
Sometimes it really isnt that a third or fourth opinion is required at all….it is just that the patient needs to be upfront with the doctor they are seeing and say what they are feeling…even if it is a little awkward at the time rather than leave without saying anything and move to the next doctor. Rheumatologists are not mind readers (although us patients sometimes refer to them as the Wizard!!!) and we need to tell them what is on our mind. Speaking first hand when I did this I was able to develop a kind of partnership with my Rheumy which has lead to me having a greater peace of mind and confidence.
Irwin I am in Australia and also have sero negative Ra which I also told was not RA….until I had a wrist arthroscope and the surgeon declared I had RA. Come a long way since then but that was only two years ago. Not sure where I would be if not for the arthroscope.