So, today I had an appt with the rheumatologist--whom I love. She is wonderful. It has been about 1 month since my last visit and I was somewhat anxious about it, just because so many things have come to pass since then. It turned out to be a very good visit overall. What I like about my rheumie is that she lets me talk; she lets me get it all out there, and its ok. It's a safe space where I don't feel like I'm judged or doing the wrong thing...it's so important, especially at times of uncertainty. I remember during my first year of medical school we were asked what we thought was the most important quality a physician had. Multiple answers were shouted out from intelligent, skilled, compassionate, etc. The list went on and on. While we were all right that these qualities were important, the most important quality a physician had according to patients was that they listened. We were all scratching our heads...what?!?! Listened? Isn't that what doctors do? Isn't that what we do when we have standardized patients? For those of you who don't know, these are real people that act like patients so that we can learn and practice how to interview a patient and do physicals. We all thought....um, isn't that obvious? Doesn't every doctor listen to their patients?
They don't...as a patient, I can tell you I feel like I'm not heard. I say one thing and it's like it goes in one ear and out the other. One doctor I'm seeing did not address one of the issues I was having, and when I brought it up, he laughed saying your patients will tell you the problem if you just listen. It's strange since I don't feel heard at all at times.
I am somewhat of a diagnostic conundrum. My autoimmune panel shows multiple autoantibodies at high titers...each of which is SUPPOSED to be 99% specific for such-and-such disease. Meaning, people who do have this test, have that disease, making it a rule in diagnosis. As I was discussing my symptoms, my doctor was like....hmmm, its more large than small joint now, and clinically it is looking like an inflammatory arthritis but not sure what exactly it is. I applaud her candor, just because we doctors don't know everything. There are arrows pointing from one side to another in the immune system and there is just no way of "knowing" anything really. In clinical medicine, its messy. Patients (and their diseases) don't read the textbooks, or abide by certain rules. So, when I look at my own symptoms, there is still a very real possibility that I have a disease that is undiscovered. When I read about autoimmune disease diagnosis and presentation, it is interesting how there are no rules. Some people have seronegative rheumatoid arthritis. Seronegative, eh? Like no immune markers at all? What is the pathophysiology if there are no markers? Or maybe the markers are present but too low, lower than the lower limit of detection, or maybe they are busy doing their thing in the synovium and not in the plasma to begin with? My point is that some people have disease, symptoms, clinical manifestation and no labs, while others have autoantibodies and little or few symptoms. While autoimmunity does not equal autoimmune disease, it is interesting to appreciate maybe we are seeing diseases at different stages of progression if we consider it to be one disease like RA, where you can be seronegative and convert at a later time. Maybe the treatment combination that works defines a subset of patients within a disease population and this subset is physiologically different but the presentation is the same. To me, autoimmunity is a whole new world (like in disney) of possibilities and the unknown. We don't know everything....maybe we know nothing compared to the vast spectrum of everything. It's an iceberg! 90% or so is underwater, the unknown.
So, my labs are all over the place, but as most experts say, its all about the clinical symptoms that drive the diagnosis. ANAs are notorious for being positive in at least 5% of the normal, healthy population. I remember back during second year someone said something that I always remember...you deserve the results of the lab you order. Meaning, if you order it, you better use it or be prepared to use it if it turns out unexpected. With patients with unexpected positivity, the literature says to look at clinical symptoms. Many of the conventional assays may be very sensitive and cross react and therefore may not be reliable. Bottom line is that you should only order what the patient presentation dictates you to order.
So, today I learnt that it is time to be aggressive. This is week 4 of MTX (methotrexate) at 10 mg. Next step is to increase to 17.5 mg...and I am a little apprehensive. If you google MTX and what people say about it, you get the whole spectrum. As for myself, I was very hesitant to get on it and my family was even more reserved about the whole idea. I hope (and pray) that this will be it. We discussed the possibility of combo treatment with plaquenil or sulfasalazine. Overall, she was very confident that we can get this under control, and her hope gives me hope.
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