Is there a Dr. House in the house?
November 4, 2022 7:15 PM   Subscribe

A family member has two mystery ailments, one of which is excruciatingly painful (on the level of "how much morphine you got?" that may or may not be related. Docs at the hospital are basically ¯\_(ツ)_/¯and are going to discharge her. How do I find a Dr. House to investigate? Cryptic details inside.

Family member has excruciating abdominal pain. Ruled out so far: ulcers, pancreatitis. Doctors are out of ideas. Family member suddenly also has facial paralysis. It's not a stroke or Bell's palsy. Patient is being given nivumolab and zometa for Stage 4 kidney cancer. Apparently it's not that either (cancer has diminished significantly and it's not osteonecrosis). YANAD, YANHD, but if this rings any bells we would sure like to know. And if you know of a doctor in New England or a doctor that does telemedicine that likes a mystery, we'd like to know that too. And if you know how to find the right kind of doctor to investigate, please info.
posted by rednikki to Health & Fitness (11 answers total) 1 user marked this as a favorite
Best answer: What kind of imaging have they had performed since the pain began? My first thought is a bowel obstruction (my mom had pancreas cancer that led to a bowel blockage and it was very painful.)
posted by tatiana wishbone at 7:40 PM on November 4, 2022 [1 favorite]

Best answer: Apologies if you've already covered this, but: if it's not the cancer, could it be one of the treatments? Immunotherapies like nivolumab sometimes produce dangerous autoimmune-like side effects, including for example colitis (maybe already ruled out?) and encephalitis. These are still kind of new drugs and there seems to be a lot we don't know about their side effect profiles. Non-specialists may know even less.

If it was me, I'd want to talk to the doctor who was prescribing the nivolumab and explicitly ask them to consider whether the symptoms could be caused by the immunotherapy. They should actually think about whether their treatment is causing this crisis, not just wave it off -- make sure they know what studies the hospital has done. If the symptoms are an immunotherapy side effect, steroids are probably called for -- ask the doctor to consider this option.

NB I am not a doctor or any kind of expert in this area. The case reminds me slightly of something that happened with my dad.
posted by grobstein at 7:44 PM on November 4, 2022

Best answer: I’ve known several people who had excruciating abdominal pain that wasn’t getting diagnosed properly, and it turned out to be their gall bladder.

But if you need a Dr. House, what you want is the Mayo Clinic. You don’t need a referral to be seen by them.
posted by MexicanYenta at 8:00 PM on November 4, 2022 [10 favorites]

Best answer: Some drugs cause or exascerbate Myesthenia gravis, that will cause paralysis. Some chemo drugs are culprits in this. If there is a mix of drugs sometimes they act together. There was also early talk of "Scromiting" scream vomiting from powerful marijuana. People buy gummies or oils for pain and they may also have this effect. See Cannibinoid Hyperemesis Syndrome.
posted by Oyéah at 8:03 PM on November 4, 2022 [1 favorite]

Best answer: If you don't get a solution elsewhere, you might try crowdsourcing a diagnosis.
posted by NotLost at 8:36 PM on November 4, 2022

Best answer: I don’t have any experience with this, so I’m not sure if it’s useful since it might be a longer timeframe, but came across this NYT article (archive link) that pointed to the Undiagnosed Diseases Network that does have a directory of their centers if there is one near your family member. You could find a directory of people at one of the centers and perhaps be able to do a little research into their backgrounds and reach out to one before applying.
posted by sincerely yours at 11:50 PM on November 4, 2022

Best answer: I would ask if the hospital has a toxicologist on staff who can review your family member's medications and supplements for possible adverse reactions, drug allergies, and dangerous interactions.

Have a list of everything they take and have taken recently, and a food log if possible (sometimes you're not supposed to eat or drink certain things on certain medications, etc).

If your family member has been seriously ill, and now hospitalized, it's possible medical providers have been adding more and more medication without a careful review of what's already there.

Source: I have a family member who is an emergency room physician and toxicologist.

If your family member rolled up to his ER, he'd be looking over that information to make sure it wasn't a medication issue. Also, I personally have a drug allergy that turns my extremities into jelly.
posted by champers at 3:52 AM on November 5, 2022

Best answer: My brother with a few other factors affecting his health, had the excruciating abdominal pain with numb and spacey affect, skin irritations. Turns out some coincidental South African dermatologist in the Bundaberg ER identified copra-porphyria, an extremely rare condition often overlooked in extreme abdominal pain episodes. My brother had been in ER for many days and every test they’d applied was getting nothing. The dermatologist happened to have seen it once before in South Africa. Liver enzyme tests show porphyria’s, and subsets, presence. Treatment is heme injections given to balance these in weekly doses. Very rare, but okay, if all else leads nowhere, maybe look at a porphyria of some kind.
posted by honey-barbara at 4:09 AM on November 5, 2022 [2 favorites]

Best answer: Oh hey that sounds familiar. Take a look at this PubMed article on Slipping Rib syndrome, and if it sounds like it's worth checking out, we saw Dr. Andrew Doben without a referral and with only a couple days' delay.

Obviously this is the drum I'm gonna bang for a while, but we're four days out from surgery and my wife has gone from seriously wondering how long she'd survive with this level of pain to being antsy about getting to go ride her horse again.
posted by restless_nomad at 5:37 AM on November 5, 2022 [2 favorites]

Best answer: If your family member has a womb, has endometriosis been explicitly ruled out?
posted by heatherlogan at 6:57 AM on November 5, 2022 [1 favorite]

Best answer: Mayo Clinic was suggested, but there are excellent hospitals in Boston. If you not are already at a large cancer institute like Dana Farber, then you might book a consultation.
posted by pjenks at 8:21 AM on November 5, 2022

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