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Crowdsourcing my medical dilemma
Oct. 3rd, 2021 12:59 pmI do not know what to do, and I'm looking for opinions.
My original plan was to wait until Emma goes to see the rheumatologist on Dec 20 and then go the rheumatologist again myself to see if her lupus diagnosis plus my continued positive ANA, two positive tests for RNP antibodies (March and August), plus this whole whatever it is that may or may not be Epstein Barr thing changes anything from when I saw the rheumatologist in 2020.
This checklist is the diagnostic criteria that doctors look for to determine lupus. You don't have to have all of these, but I don't know how many or what weight is given to any of them.Emma has the anemia, the anti-Sm antibodies, and the positive ANA. My research seems to indicate that the anti-Smith antibodies are pretty definitive and that she will be diagnosed with lupus as a result, but who knows? We could get in there, and the doc could say that she's got a lot of the symptoms, but it's not conclusive or whatever. I think that's unlikely, but it's possible.
ETA So I looked back at her labs, and she has the anti-DNA antibodies, not the Smith's, but they are given the same weight as diagnostic criteria. I actually found what I was looking for: here's the current diagnostic criteria and the weight given to each item. As far as this chart goes, Emma has the positive ANA (going back to 2018); she has the anti-DNA worth 6 points and then nothing else on the chart. So I guess there is actually a real possibility she won't be diagnosed with lupus after all. She would need to test positive for some of those other proteins and/or antibodies, which I assume is what the rheumatologist will do. Damn. End ETA
On that list, I have the positive ANA, oral ulcers, arthritis, and I wonder if what is going on with my chest and breathing right now is serositis. I had a chest X-Ray done that was clear, no pneumonia, but I'm having trouble telling if pleurisy would show up on an X-Ray. I think my research is telling me that I could have pleurisy without fluid, and that wouldn't show up on an X-Ray, and it's also telling me that I could have pericarditis that also wouldn't necessarily show up on an X-Ray (both forms of serositis). My chest burns and I feel like I can't breathe very well; I also have shoulder pain (which to be fair, I think could stem from when my lymph nodes were so painfully swollen that I had to move and hold myself oddly, essentially throwing my shoulder out of whack). My chest pain isn't sharp and stabbing, but I do see that some people with pleurisy describe it as similar to what I am feeling. Does anybody know if my understanding of pleurisy as described here is correct?
Here's the dilemma: should I go ahead and try to see the rheumatologist now or wait until Emma gets a diagnosis?
I don't want to prejudice her against Emma. I don't want to go and have her dismiss me and me get upset or me assert myself or try to advocate and that piss her off and then color her treatment of Emma, even unconsciously. I also wonder if Emma having a positive diagnosis would make her more likely to accept that something rheumatological is happening to me and more likely to try to treat me (as my neuro has done; I don't have a neurological diagnosis, but he is treating my symptoms on the supposition that something neurological is probably wrong with me). That checklist doesn't mention family history of lupus as being a consideration in diagnosis so IDK.
Should I wait to see what this infectious disease doctor has to say (assuming that it's not a million years before I actually get an appointment)? Am I just muddying the waters by trying to see a billion docs at once?
But I wonder if I should go to the rheumatologist now while my chest still bothers me because OMG do I hope it is still not bothering me three months from now. Will my report of having felt the sensation of pleurisy be adequate if I am not still feeling it at that time?
What would you do (while remembering that my main priority is my daughter's health and seeing that she receives the best care)?
My original plan was to wait until Emma goes to see the rheumatologist on Dec 20 and then go the rheumatologist again myself to see if her lupus diagnosis plus my continued positive ANA, two positive tests for RNP antibodies (March and August), plus this whole whatever it is that may or may not be Epstein Barr thing changes anything from when I saw the rheumatologist in 2020.
This checklist is the diagnostic criteria that doctors look for to determine lupus. You don't have to have all of these, but I don't know how many or what weight is given to any of them.
ETA So I looked back at her labs, and she has the anti-DNA antibodies, not the Smith's, but they are given the same weight as diagnostic criteria. I actually found what I was looking for: here's the current diagnostic criteria and the weight given to each item. As far as this chart goes, Emma has the positive ANA (going back to 2018); she has the anti-DNA worth 6 points and then nothing else on the chart. So I guess there is actually a real possibility she won't be diagnosed with lupus after all. She would need to test positive for some of those other proteins and/or antibodies, which I assume is what the rheumatologist will do. Damn. End ETA
On that list, I have the positive ANA, oral ulcers, arthritis, and I wonder if what is going on with my chest and breathing right now is serositis. I had a chest X-Ray done that was clear, no pneumonia, but I'm having trouble telling if pleurisy would show up on an X-Ray. I think my research is telling me that I could have pleurisy without fluid, and that wouldn't show up on an X-Ray, and it's also telling me that I could have pericarditis that also wouldn't necessarily show up on an X-Ray (both forms of serositis). My chest burns and I feel like I can't breathe very well; I also have shoulder pain (which to be fair, I think could stem from when my lymph nodes were so painfully swollen that I had to move and hold myself oddly, essentially throwing my shoulder out of whack). My chest pain isn't sharp and stabbing, but I do see that some people with pleurisy describe it as similar to what I am feeling. Does anybody know if my understanding of pleurisy as described here is correct?
Here's the dilemma: should I go ahead and try to see the rheumatologist now or wait until Emma gets a diagnosis?
I don't want to prejudice her against Emma. I don't want to go and have her dismiss me and me get upset or me assert myself or try to advocate and that piss her off and then color her treatment of Emma, even unconsciously. I also wonder if Emma having a positive diagnosis would make her more likely to accept that something rheumatological is happening to me and more likely to try to treat me (as my neuro has done; I don't have a neurological diagnosis, but he is treating my symptoms on the supposition that something neurological is probably wrong with me). That checklist doesn't mention family history of lupus as being a consideration in diagnosis so IDK.
Should I wait to see what this infectious disease doctor has to say (assuming that it's not a million years before I actually get an appointment)? Am I just muddying the waters by trying to see a billion docs at once?
But I wonder if I should go to the rheumatologist now while my chest still bothers me because OMG do I hope it is still not bothering me three months from now. Will my report of having felt the sensation of pleurisy be adequate if I am not still feeling it at that time?
What would you do (while remembering that my main priority is my daughter's health and seeing that she receives the best care)?
