I went for my follow-up appointment with the rheumatologist today.
(Hang in there through this post…there’s some background info to get through before you get to the zinger of how I know this doctor had no empathy for what I’m going through!)
In case you haven’t read previous posts, the short story is:
- Two rheumatologists in Topeka in a span of 2.5 years – first mid-diagnosed for two years and then second I just wasn’t satisfied was best for me. No positive results from any of the 8 medications I’d been on in that time.
- Decided to go to KU Med (academic hospital an hour away) in October.
- October appointment led to lots of blood work and X-rays
- Follow up from that in November – confirm diagnosis of Sjogren’s. Scheduled neurological tests for nerve conduction to document neuropathy I have going on.
- NCS and EMG done – results were all normal.
And now we’re up to today. The attending really wanted to get me in more quickly than they could get me in on his schedule, so he had me scheduled for one of the residents this morning.
That means that the resident comes in and does the initial “exam” and then goes out and talk to the attending doctor and then they both come in and tell you what the plan is going to be.
Fine, I get it, it’s a teaching hospital. I’ve been an educator for almost 15 years – totally understand the importance of this process.
However, it is UNBELIEVABLY FRUSTRATING to have to start over at ground zero with the resident. He hadn’t even glanced at my chart which documented my previous two visits to KU Med. He asked me every question all over again. I understand there may be some repetition as he may have thoughts that differ from other physicians and/or may want to see if anything has changed since last month when I was there. But he CLEARLY had no idea what I was there for – the fact that I was there to specifically follow up from the neurological testing and that the attending was going to share with me the research he was going to do after my last appointment on the efficacy of using rituxin for Sjogren’s patients not responding to other meds.
He even has me go through the 8 medications I’ve previously been on – and not in a “confirming” way, but in a “I clearly haven’t looked at a single thing in your chart, so you’re going to have to go through 3 years of medications, their timelines, their outcomes and your allergic reactions to two of them all over again when it’s right here in front of me.”
And the best part of it all – the one moment when I thought to myself “This shows exactly how little some doctors understand about and empathize with the problems their patients are facing” was after he asked me “Have you ever had any depression?” (a normal enough question). When I answered “well, I’ve been dealing with these autoimmune diseases, pain and fatigue for the past three years, so…yes,” he looked completely surprised, like the thought of dealing with all of this for so long would have any toll on my emotional or psychological well-being. He clearly didn’t know what to say to that and just kind-of moved on.
And this isn’t someone that is unfamiliar with the toll of autoimmune diseases. This is a resident in the rheumatology department. This is what he deals with all day long. And the thought never crossed his mind that dealing with all of these symptoms and everything else that goes along with it might cause some depression or anxiety?
This actually explains a lot about my visit with him – like why he was trying to explain away my fatigue as being caused by sleep apnea or something (which is not at all what’s going on with me!), because clearly someone with Sjogren’s couldn’t have fatigue bad enough to be exhausted all day after 9 hours of sleep at night as I had described to him. Seriously?
Thankfully the attending came in after their conference out in the hall and the resident turned into someone that sat in the corner while the attending and I went over my symptoms, what steps to take next and the overall treatment plan that we’re working our way through.
Next step for me…MRI to check for white matter brain lesions (since my neurological symptoms are actually starting to look more like central nervous than peripheral neurological problems), visit with a neurologist (full visit – not like the quickie one just for the NCS/EMG tests I had done) and spinal tap to rule out infection or other causes of my neurological problems.
If there’s no other reason found (nothing found in the spinal tap to suggest infection, etc.) then I’ll start rutuxin (IV infusion that I’ll take once and then again two weeks after and then hopefully it will last for 6-12 months before I have to do it again).