Entry tags:
Crowdsourcing my medical dilemma
I 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)?
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In your shoes, I'd also check in with my primary care doctor about the breathing pain. (Well, personally I'd message my asthma specialist, but you know what I mean!)
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The PCP tested me for COVID and flu (negative) and did the chest X-Ray (clear). Then when my lymph nodes swelled, she thought it was my thyroid and sent me to my endo who did the ultrasound and confirmed it was swollen lymph nodes and my thyroid is okay (well okay for values of having Hashimoto's). PCP also ran the Epstein Barr panel and told me I have mono again, but the endo said I don't have it again; endo says it's just indicating that I had a past infection. Endo is sending me to the infectious disease doc because I pointed out that if I don't have mono now then I didn't have mono last year when endo diagnosed me with it as the tests are the same.
So from the PCP's perspective, I have mono again.
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It sounds like you're afraid of the rheumatologist's judginess, so I think you should try to see another doctor (the infectioous disease specialist?) first. And where is your primary care doctor in all of this?
*hugs you so much*
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*hugs*
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Maybe you could get your GP to confirm or rule out the pleurisy and then you would have that test result the next time you see the rheumatologist.
One would hope that the rheumatologist would be professional enough not to be annoyed when you have Further Questions. But that's more of a personality thing than a medical thing.
Or you could try sending Emma to a rheumatologist in Atlanta and you could keep at it with this one?
Wishing you all the love and answers!!!! Let's talk again soon. Hope Josh is continuing to feel better.
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Her first positive ANA test was in 2018, so that means because those two docs bungled it all so badly, that's 3 years of wasted time in getting her help, and I know what a long ass journey it's been for me to get the help I need, and I think I've just blown that all out of proportion. Combine that with pandemic and politics depression and my own not feeling well, and I think I just made this into a way bigger thing than it needs to be.
I'm glad Josh talked some sense into me. LOL
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And I totally get feeling all MOMMA BEAR MUST PROTECT about anything to do with kids!!!!!
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A tendency towards autoimmune stuff can be hereditary. Whether it counts for your specific doctors' perspectives is trickier.
Seeing multiple doctors at once, if they're not good with chatting with each other or if your primary isn't assertive/proactive, means the burden of piecing stuff together falls more squarely in your lap. But if you're having difficulties that doctors don't take seriously enough, then waiting to see them in sequence won't necessarily help you, I think.
I've been doing a bit of doctor-retread lately, too--several specialist doctors were like, nope, you don't fit our About to Die checklists, therefore nothing's wrong with you, and now I've narrowed down several things they've missed. It's correct that I'm not on the brink of death currently :P but what they've missed is stuff for which one may reasonably seek medical care. So, extra sympathy to go with the good wishes.
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I have absolutely run into the whole "you don't hit any of the narrow criteria I am looking for, therefore nothing is wrong with you" bullshit. I am so grateful to have a neurologist who thinks outside the box.
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I think it definitely helps to have fewer doctors in the pool, but that is on the understanding that you have a solid dx and treatment plan. As things stand now, it might be beneficial to throw spaghetti at the wall, so to speak.
As for the rheum, if there are other good ones in the area, it may be time to look elsewhere. Hopefully, Emma has enough boxes ticked from the get-go and can get the care she needs there, but it sounds like your last experience was a frustrating and incomplete one. That's hard to come back from, especially when trying to dance around feelings and protocol.
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Her first positive ANA test was in 2018, so that means because those two docs bungled it all so badly, that's 3 years of wasted time in getting her help, and I know what a long ass journey it's been for me to get the help I need, and I think I've just blown that all out of proportion. Combine that with pandemic and politics depression and my own not feeling well, and I think I just made this into a way bigger thing than it needs to be.
I'm glad Josh talked some sense into me. LOL
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Will keep you in my prayers my dear.
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Her first positive ANA test was in 2018, so that means because those two docs bungled it all so badly, that's 3 years of wasted time in getting her help, and I know what a long ass journey it's been for me to get the help I need, and I think I've just blown that all out of proportion. Combine that with pandemic and politics depression and my own not feeling well, and I think I just made this into a way bigger thing than it needs to be.
I'm glad Josh talked some sense into me. LOL
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If the doc lets this prejudice their view of Emma then screw them and find her a better doc for a second opinion. I'm sure Atlanta has a bigger medical pool available than you do.
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Her first positive ANA test was in 2018, so that means because those two docs bungled it all so badly, that's 3 years of wasted time in getting her help, and I know what a long ass journey it's been for me to get the help I need, and I think I've just blown that all out of proportion. Combine that with pandemic and politics depression and my own not feeling well, and I think I just made this into a way bigger thing than it needs to be.
I'm glad Josh talked some sense into me. LOL He said exactly what you're saying here.
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"HUGS"
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Her first positive ANA test was in 2018, so that means because those two docs bungled it all so badly, that's 3 years of wasted time in getting her help, and I know what a long ass journey it's been for me to get the help I need, and I think I've just blown that all out of proportion. Combine that with pandemic and politics depression and my own not feeling well, and I think I just made this into a way bigger thing than it needs to be.
I'm glad Josh talked some sense into me. LOL
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"HUGS"
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I am so saddened by how many of us have to deal with these issues.
*hugs*
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I hope things work out...
{hugs}
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Her first positive ANA test was in 2018, so that means because those two docs bungled it all so badly, that's 3 years of wasted time in getting her help, and I know what a long ass journey it's been for me to get the help I need, and I think I've just blown that all out of proportion. Combine that with pandemic and politics depression and my own not feeling well, and I think I just made this into a way bigger thing than it needs to be.
I'm glad Josh talked some sense into me. LOL
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Her first positive ANA test was in 2018, so that means because those two docs bungled it all so badly, that's 3 years of wasted time in getting her help, and I know what a long ass journey it's been for me to get the help I need, and I think I've just blown that all out of proportion. Combine that with pandemic and politics depression and my own not feeling well, and I think I just made this into a way bigger thing than it needs to be.
I'm glad Josh talked some sense into me. LOL
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Her first positive ANA test was in 2018, so that means because those two docs bungled it all so badly, that's 3 years of wasted time in getting her help, and I know what a long ass journey it's been for me to get the help I need, and I think I've just blown that all out of proportion. Combine that with pandemic and politics depression and my own not feeling well, and I think I just made this into a way bigger thing than it needs to be.
I'm glad Josh talked some sense into me. LOL
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I'm sorry I don't have any other advice, but again I'm glad you made the appointment. *hugs*
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Thank you, friend. I appreciate the support.