lunabee34: (help by jjjean65)
lunabee34 ([personal profile] lunabee34) wrote2021-10-03 12:59 pm
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)?
ursula: bear eating salmon (Default)

[personal profile] ursula 2021-10-03 05:13 pm (UTC)(link)
How far out does your rheumatologist book appointments? Because it seems possible that if you want to see her in early January, you might need to make an appointment now.

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!)
minoanmiss: Nubian girl with dubious facial expression (dubious Nubian girl)

[personal profile] minoanmiss 2021-10-03 05:28 pm (UTC)(link)
JFHC you should not have to solve a riddle like this just to get yourself and your daughter treated.

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*
makamu: (Default)

[personal profile] makamu 2021-10-03 06:54 pm (UTC)(link)
I am not a doctor, and so I can only cross my fingers for you and Emma and wish you all the best. Which is about as useful as eff all in these kinds of situations, but...
princessofgeeks: (Default)

[personal profile] princessofgeeks 2021-10-03 07:51 pm (UTC)(link)
My vote is to write to the rheumatologist and matter of factly ask for the rest of the panel that she ran since they left it out of the rest of your medical records that you got before.

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.
princessofgeeks: (Default)

[personal profile] princessofgeeks 2021-10-05 03:21 pm (UTC)(link)
I am so glad you are feeling better and had a place to air it all out.

And I totally get feeling all MOMMA BEAR MUST PROTECT about anything to do with kids!!!!!
thistleingrey: (Default)

[personal profile] thistleingrey 2021-10-03 07:55 pm (UTC)(link)
Sending good wishes.

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.
thistleingrey: (Default)

[personal profile] thistleingrey 2021-10-05 03:25 pm (UTC)(link)
Glad of your neurologist! That's so important.
china_shop: A Calvin and Hobbes hug (Hugs (Calvin&Hobbes))

[personal profile] china_shop 2021-10-03 08:08 pm (UTC)(link)
I don't have any advice, but just *soooo many hugs*
trobadora: (Default)

[personal profile] trobadora 2021-10-03 08:30 pm (UTC)(link)
I have no useful advice, but I hope you can make a decision that'll work for you! *hugs*
aphrodite_mine: (community - thumbs up!)

[personal profile] aphrodite_mine 2021-10-04 12:01 am (UTC)(link)
This is so hard and I'm sorry that you're going through it - trying to do the math of who and where and when on top of your own symptoms and trying to get Emma cared for.

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.
aphrodite_mine: (paprika - podium loves this song)

[personal profile] aphrodite_mine 2021-10-05 12:29 pm (UTC)(link)
Completely relate! <3
amejisuto: (Default)

[personal profile] amejisuto 2021-10-04 12:18 am (UTC)(link)
I wouldn't even know where to begin with that decision. You can't help Emma if you're in the hospital so you have to take care of yourself too. Can you call, or talk to the doctor you're needing to see and tell them your worries? See what they say?

Will keep you in my prayers my dear.
amejisuto: (HW- Enchanted October by magic_art)

[personal profile] amejisuto 2021-10-05 10:37 am (UTC)(link)
Don't feel silly. You're sick and feel like crap yet worried about your daughter at the same time. I'm glad talking to Josh helped. I guess he's worth keeping around for more than opening pickle jars. LOL!
corvidology: Young Frankenstein ([EMO] HUGS MONSTER)

[personal profile] corvidology 2021-10-04 01:06 am (UTC)(link)
I'm probably not very useful as I have no experience in this area but... I'd suggest going ahead and taking care of your own health first. See the doc while you have the symptoms.

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.

[personal profile] timespirt 2021-10-04 03:52 am (UTC)(link)
Could you possibly get an appointment with a rheumatologist in another practice just for this problem you're having right now and get tested and then bring all you find out to the rheumatologist you and your daughter will be seeing. I know it's hard to find doctors these days but if you can be seen by someone else in another town just for what you are experiencing now instead of waiting 3 months it would take care of the problem of you and your daughters/your doctor?

"HUGS"

[personal profile] timespirt 2021-10-08 06:10 am (UTC)(link)
I don't think your irrational, just a worried parent. I can understand it because I have been navigating the same crap with bad doctors for a long time too. I'm dealing with it all the time these days.

"HUGS"
sallymn: (life 7)

[personal profile] sallymn 2021-10-04 09:40 am (UTC)(link)
What a mess, you shouldn't have to juggle like that, but have the access to decisions as quickly as possible.

I hope things work out...

{hugs}
sallymn: (Default)

[personal profile] sallymn 2021-10-06 10:50 am (UTC)(link)
It's easy to get over-fretful when it's your health or your family's... especially when you can't get firm answers quickly.
tamoline: (Default)

[personal profile] tamoline 2021-10-04 01:42 pm (UTC)(link)
Hugs and best wishes. It's really unfair that you have to make these considerations.
oracne: turtle (Default)

[personal profile] oracne 2021-10-04 08:00 pm (UTC)(link)
I am sort of horrified you are having to do all this work yourself. I would go ahead and schedule your appointment because who knows how long it will be before you can be seen? And you can always cancel if necessary.
oracne: turtle (Default)

[personal profile] oracne 2021-10-05 12:49 pm (UTC)(link)
I understand that SO MUCH. I'm glad you're feeling a little less anxious.
spikedluv: (summer: sunflowers by candi)

[personal profile] spikedluv 2021-10-05 06:16 pm (UTC)(link)
When you're in the hospital you have an entire team of doctors, so I think you should totally be seeing as many doctors as you need to. And hopefully they will all talk to each other and brainstorm.

I'm sorry I don't have any other advice, but again I'm glad you made the appointment. *hugs*