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Hey so PSA, if you keep getting UTI symptoms even though you're chugging cranberry juice
You might want to double check if your Dr has run urine cultures (not just the rapid test). If they keep coming up negative, I would strongly suggest looking into interstitial cystitis (IC)
You might want to double check if your Dr has run urine cultures (not just the rapid test). If they keep coming up negative, I would strongly suggest looking into interstitial cystitis (IC)
Especially because drinking a lot of acidic beverages (such as cranberry juice) can make IC symptoms worse.
Also if this sounds very familiar and you also have a lot of, say, weird mystery rashes or like terrible "stomach flus" that no one else catches or a bunch of "sinus infections" that no one else catches
You might want to look into allergy testing and/or mast cell disorders
You might want to look into allergy testing and/or mast cell disorders
*also autoimmune stuff
Basically, if your immune system keeps responding like there's an infection but tests indicate no infection and no one else is catching it, you might want to see an immunologist
Basically, if your immune system keeps responding like there's an infection but tests indicate no infection and no one else is catching it, you might want to see an immunologist
Also especially if your CBC (complete blood count) panels tend to come back with atypical results, like your white blood cell count always runs a little high just as one example
[Medical BS]
I wish that GPs and urgent care doctors (and even rheumatologists) were better at looking at a pattern of symptoms like this, and referring people to the appropriate specialist
Instead of just telling us over and over again that "there's no infection" and shrugging
I wish that GPs and urgent care doctors (and even rheumatologists) were better at looking at a pattern of symptoms like this, and referring people to the appropriate specialist
Instead of just telling us over and over again that "there's no infection" and shrugging
Anyway currently my official on paper diagnosis from my immunologist is "immune dysregulation"
But I have to say that actually treating that (and likely MCAS) has literally changed my life, and I wish I'd known sooner
But I have to say that actually treating that (and likely MCAS) has literally changed my life, and I wish I'd known sooner
Testing for MCAS is imperfect (largely because we only came up with the first set of proposed diagnostic criteria in 2010)
it's a giant pain to manage, so definitely like...get checked for other more common stuff like IgE mediated allergies if you can https://twitter.com/UntoNuggan/status/1193288337022423040?s=19
it's a giant pain to manage, so definitely like...get checked for other more common stuff like IgE mediated allergies if you can https://twitter.com/UntoNuggan/status/1193288337022423040?s=19
Also like...for so long friends and body workers and PTs would hear about my body and go "are you *sure* you don't have allergies?"
I tried to figure it out, but I couldn't find a pattern
Little did I know that uh is a very Mast Cell Problems (tm) issue https://www.mastattack.org/2019/07/yes-i-can-react-to-that-patient-lecture/
I tried to figure it out, but I couldn't find a pattern
Little did I know that uh is a very Mast Cell Problems (tm) issue https://www.mastattack.org/2019/07/yes-i-can-react-to-that-patient-lecture/
My very not scientific metaphor for MCAS is:
"sometimes my body is just doing its thing, cooking with a gas stove. But my mast cells think this is a threat, so they pour water on the gas burner and suddenly everything is on fire."
"sometimes my body is just doing its thing, cooking with a gas stove. But my mast cells think this is a threat, so they pour water on the gas burner and suddenly everything is on fire."
Also "what my mast cells think is a threat" and "how much water they dump on the gas burner" can vary...A Lot, so it's unsurprising that I couldn't independently find a pattern https://www.mastattack.org/2016/04/the-devils-arithmetic/
