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Figuring out obscure medical issue(s)
Aoi Tsuki
Registered User regular
Registered User regular
My sister has suffered her whole life from increasingly crappy medical problems--nothing really debilitating or life-threatening, but as she's gotten more frustrated, several of us in the family have started looking into it in more depth. I know we have some medical professionals on here, and at least a few people who might have better luck than me in playing Dr. House via Google, so here we go:
Ever since we were kids, she's suffered chronic sinus infections. Crappy, but not remarkable. Ever since she hit puberty, she's had occasional bouts of exhaustion, heavy and irregular periods that don't respond to birth control, and considerable weight gain--also not too far out of the ordinary, in that several common conditions could be causing it. The thing is, though, both sets of symptoms have only gotten worse, despite a shitload of medical intervention. She even had surgery to try to stop the sinus infections, but she still gets them all the time. She also has allergic reactions to a huge variety of foods--but we're not certain they're allergic reactions to anything at all, because she's tried every elimination diet ever, including no dairy, no eggs, vegetarian, a few varieties of vegan, gluten-free, and recently no sugar, as highly sugary foods are the quickest way to make her sick (ears get itchy, sinuses start swelling, etc., though nothing life-threatening). Natural sugars like agave make her less miserable, but even when she makes everything on such-and-such diet herself with carefully vetted ingredients, she often wakes up too sinus-poundy to go to work the next morning, and it's more frequent now, up to at least once every week or two.
She's now in her mid-twenties and - to my knowledge - has been diagnosed so far with polycystic ovary syndrome (of which her gyno doesn't really seem that certain, having already ruled out endometriosis), possible hyperthyroidism (eliminated with a couple of blood tests from different doctors), and acute chronic sinusitis, which seems to be a catchall for her shitty symptoms, not an explanation of what the fuck is actually wrong with her.
So. My question is not "What exactly is wrong with her?", as multiple general practitioners, allergists, ENT specialists, and OBGYNs have already failed to give a decent answer. I'm just looking for direction in what other specialists she might talk to, and opinions on a hunch I've been working on through too many viewings of Mystery Diagnosis: do you think she has two disparate sets of hard-to-treat problems (allergy/sinuses coupled with her reproductive stuff), or is there a possibility that all this shit is somehow connected in some kind of autoimmune disorder? It's not absolutely impossible that she could just have several things wrong at once and I've been watching too much TV, but it feels interrelated to me, if that makes any sense. Things are also coming to a head because she wants to have kids, and none of this shit is helping.
Ever since we were kids, she's suffered chronic sinus infections. Crappy, but not remarkable. Ever since she hit puberty, she's had occasional bouts of exhaustion, heavy and irregular periods that don't respond to birth control, and considerable weight gain--also not too far out of the ordinary, in that several common conditions could be causing it. The thing is, though, both sets of symptoms have only gotten worse, despite a shitload of medical intervention. She even had surgery to try to stop the sinus infections, but she still gets them all the time. She also has allergic reactions to a huge variety of foods--but we're not certain they're allergic reactions to anything at all, because she's tried every elimination diet ever, including no dairy, no eggs, vegetarian, a few varieties of vegan, gluten-free, and recently no sugar, as highly sugary foods are the quickest way to make her sick (ears get itchy, sinuses start swelling, etc., though nothing life-threatening). Natural sugars like agave make her less miserable, but even when she makes everything on such-and-such diet herself with carefully vetted ingredients, she often wakes up too sinus-poundy to go to work the next morning, and it's more frequent now, up to at least once every week or two.
She's now in her mid-twenties and - to my knowledge - has been diagnosed so far with polycystic ovary syndrome (of which her gyno doesn't really seem that certain, having already ruled out endometriosis), possible hyperthyroidism (eliminated with a couple of blood tests from different doctors), and acute chronic sinusitis, which seems to be a catchall for her shitty symptoms, not an explanation of what the fuck is actually wrong with her.
So. My question is not "What exactly is wrong with her?", as multiple general practitioners, allergists, ENT specialists, and OBGYNs have already failed to give a decent answer. I'm just looking for direction in what other specialists she might talk to, and opinions on a hunch I've been working on through too many viewings of Mystery Diagnosis: do you think she has two disparate sets of hard-to-treat problems (allergy/sinuses coupled with her reproductive stuff), or is there a possibility that all this shit is somehow connected in some kind of autoimmune disorder? It's not absolutely impossible that she could just have several things wrong at once and I've been watching too much TV, but it feels interrelated to me, if that makes any sense. Things are also coming to a head because she wants to have kids, and none of this shit is helping.
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But fuck you — no, fuck y'all, that's as blunt as it gets"
- Kendrick Lamar, "The Blacker the Berry"
Best of luck, this sounds incredibly frustrating.
I assume she's had numerous allergy swab tests?
Too numerous for me to remember. I do vaguely recall her telling me about an allergist using a giant paddle covered with needles (each tipped with a potential allergen) to go WHOMP on her back and then watch her (allergic) reaction to each one. Still unclear how much she was exaggerating on that one.
Somehow, the rest of her testing wasn't quite as dramatic, so I'm unclear on the exact quantity--only that she went to four or five different people before giving up.
The fungus lead sounds interesting. She's moved about quite a bit since her problems began, but it doesn't sound like an environmental thing, necessarily.
As for pursuing new medical options, good luck. I've also been through quite a bit of this. In my experience, doctors do not want to work to find out what might be affecting their patients' health. They want to probe/swab/extract/analyze/irradiate/whatever, perform one simple conclusive test, and point them in the direction of whatever drug is used for that specific problem. The only advice I can offer is not to look for doctors, but for scientists who are also specialists in treating patients, because they will be more interested in and qualified to perform less conventional options. Of course, some of these people assume that because they are "specialists" in their field, they know everything, have seen everything, and can not possibly benefit from looking any deeper. (Sorry for the tangent, bit of a personal sore spot there.)
As far as possible conditions, the only thing I can think of is some type of hormone disorder/imbalance that could be causing both. I jumped at PCOS too, but if your sister has doubts of that, I would encourage her to keep doing what she's doing and press for better answers. I hate doctors who just give their best guess and refuse to do anything more. That's what WebMD is for. Maybe she could try looking around for communities where she might find others with similar issues. For example, HysterSisters is a good community for people with reproductive issues (not just for those dealing with hysterectomy as the name suggests). I'm sure some searching on Google could lead you to a few that are more specific to her needs.
It is also entirely possible that whatever is happening to her is something that does not fall under any known condition simply because no one has made an official diagnosis of it yet. For every single disease in human history, someone had to be the first official case. Don't let them tell her that it's all in her head, that she just needs to keep trying more drugs, that it'll go away on its own, or (my personal favorite) to "just get pregnant to fix it."
Scribe. Purveyor of Logic. Player of Video Games.
Ehhhhhhh... it's sadly unfortunate, but pretty much any time a physician doesn't know the root cause of something they are quick to point to potential physcological causes. I'd be really surprised if Aoi's sister hasn't been told that frequently already.
But fuck you — no, fuck y'all, that's as blunt as it gets"
- Kendrick Lamar, "The Blacker the Berry"
Most medical websites out there are really bad at showing the associations between diverse and different symptoms. It's not easy to do either (connecting the dots, that is), even if you ARE a health care professional. Without more data, there's really no way to rule out anything, and there are quite a few chronic conditions that can fit "weight gain, allergies, sinusitis" etc., like hypercortisolism (Cushing's). The way you get more data is going to see various specialists and doctors. I know that the process is wearying and a huge pain in the ass (especially in the US), but I'd encourage your sister to continue seeing specialists until she gets a satisfying answer (at least, until they can rule out the more deadlier diseases that could produce these symptoms).
Questions directly from my sister, who's beside herself with excitement:
What was the exact timeline of her getting diagnosed? And which specialists besides the OB did she see? Lastly, how's she being treated?
Just to note: PCOS is diagnosed these days by what's known as the 'Rotterdam Criteria' (...I don;t recall off of the top of my head what the criteria are, but i know one is excess androgen & one is the presence of cysts in the ovaries).
It's a very typical test done by physicians.
If you sister has already had a battery of tests done, I'd think it unlikely that she wasn't already tested for this.
Not to try and toss a wet blanket anyone's way - I just think it would be a disservice to your sister to get her excited about this right away. She'd have to have been seeing some pretty bad doctors if they missed a PCOS diagnosis.
Yes, but my point was that she should still be uncertain: the last thing she wants is to think she has a diagnosis that she doesn't really have. It's terrible that she's had to go without answers for such a long time, but she should still be looking for answers via specialists, in my opinion.
And happy birthday to her.