3 ms·
I sometimes think we'd be better off if we didn't come up with and name catch-all diseases. I've Sarcoidosis, which basically means I have inflammation symptoms
by Benjamin_Dobell 4y ago
I sometimes think we'd be better off if we didn't come up with and name catch-all diseases. I've Sarcoidosis, which basically means I have inflammation symptoms similar to other people (~150 in 100,000), but beyond that they've basically no idea what the cause is. All attempts to identify a cause tend to identify common anomalies present in a significant portion of patients - but fairly confidently are not present in all patients. Mycobacteria (which are also mentioned in this article) for example was one such promising theory, but doesn't appear to be the cause for everyone.
It's frustrating because rather than doctors saying "I don't know, let's run some tests", it's just "Here, take this drug. It'll probably treat your symptoms." There's basically no reporting on what works for me and what doesn't, and certainly no attempt to identify potential causes - so much wasted data.
For example, as is standard practice, my rheumatologist did run a test on me for TPMT levels before prescribing Azathioprine. This is done because TPMT deficiency can lead to severe toxicity and liver damage. My TPMT results were just dandy. Alas, for some reason my liver didn't break down Azathioprine regardless and I experienced toxicity and mild liver damage. Why? Who knows, and no-one cares enough to find out. Nevermind that it could benefit others - just take Methotrexate instead. Why Methotrexate? Well, no idea, it just, kind of works. Good luck with the brain fog.