My mother-in-law is 66, in her thirties she was diagnosed with an extremely aggressive arthritis. From the heavy pain meds her kidneys lost all function, and she’s been on dialysis for the past (I forget how many) years. She started with hemo, but for the past two or three years she’s been on PD and does dialysis from home nightly.
For the past year her health has been declining in very strange ways, and nobody can pinpoint why. She fell ill on a day trip, and was put in the ER. She had an infection from an old hemo port and had to have surgery to clear it out. She code blue’d at the hospital during that trip, and it’s been downhill since. Just after that she had a surgery for a revision on a hip replacement - much to my wife’s dismay, her surgeon insisted it was necessary and she wouldn’t have any issues. The bone never healed, but she still had some mobility with a walker.
After that came the seizures, out of the blue. Then came a sharp decline in mobility. She got to a point where she’s unable to walk or move without assistance. She often tries: if you turn around for even a moment, she stands in defiance and often loses balance. During Labor Day weekend she was fighting off a bad UTI, and frequently asked to be helped to the bathroom. Father-in-law took her to the bathroom, and remembered he left some water running, and she he got back she was a few steps out of the bathroom, unconscious, not breathing, no heartbeat, and a really nasty abrasion on her head - nobody still has any idea what happened, and she doesn’t remember.
After being released from the hospital, the symptoms got even more bizarre. Loss of appetite, insomnia, hallucinations (she often holds long, drawn out conversations with deceased relatives), agitation and outright anger (yells at my father-in-law), refusal to cooperate, and panic. The more panicked she gets the more her speech degrades into half-finished thoughts and word salad.
She’s on seizure meds, although her neurologist says she sees no evidence of being epileptic. She’s on thur meds, her doctor says nothing too off to make adjustments. All tests she she’s completely physically healthy (aside from kidneys). Her psychiatrist says he sees no evidence of any issue (no demensia, no delirium). Her nephrologist says she’s their best patient, and is getting great dialysis and isn’t on any dietary restrictions.
So it’s kind of a dead ends all around. Everyone says she’s healthy and nothing wrong... but spending time with her says, “something’s very wrong here!”
Any ideas out there? Anyone experience anything similar?
The episode lasted about 30 seconds, EMS was activated. She was taken to the ER, and discharged after a couple of hours.
Here’s the strange thing, though, just as soon as she came out of the seizure and recover she’s been yelling non-stop. For about the past almost 13 hours she’s been screaming the same few things on repeat, “Daddy, please.... daddy, no puedo.... yo no puedo... daddy, please.... no, daddy.... ayuda me, help me.... daddy, please.... I can’t, I CAN’T”
We’ve put her to bed, but still nothing, screaming as loud as she can until she’s completely horse. She was given a sedative at the ER, tired for maybe 15 minutes, but otherwise not effective. She’s also had a the max allowable dose of an antipsychotic, the max dose xanax she’s allowed, and half of a melatonin... all doses were approved and suggested by her doctors with the assurance those should help her rest.
At any given time she’s had my wife and I here, my BIL, FIL, two of her three sisters, two of my wife’s cousins, my wife’s cousin’s SIL... no one and nothing can calm her.
My poor FIL, I really feel for him. These past few days have been rough on him. It’s hard to tell how much of this is medical, and how much is throwing a tantrum. When it’s him and her, these yelling fits are much shorter, but usually more abusive. Today I found out she yelled at him, told him how much she hates him, and asked him what right he had to be well while she suffers.
She’s aware. If you ask her questions or talk to her, she acknowledges you, then she goes back to yelling. She sounds like she’s in distress, but the look in her eyes is what’s confusing, it’s not the look of someone who’s in distress.
A suggestion we’ve received is, yes, she’s basically throwing a huge tantrum. She’s probably doing it to avoid sleeping, which is further exacerbating things... because she hasn’t rested it’s leading to these elaborate hallucinations. Which in turn is frightening her, she’s afraid to sleep, so she’s throwing a fit to avoid sleep.
I would think she is being checked for toxins in the blood. These toxins will cause Dementia type symptoms. Maybe the PD is no longer working.
https://www.mayoclinic.org/diseases-conditions/conversion-disorder/symptoms-causes/syc-20355197
Not for nothin, but I've had a hip replacement, bad arthritis for decades, a fusion surgery at C3-4-5 with severe stenosis now above and below the fusion, making it too dangerous for another surgery to fix the stenosis, and basically, I'm fine.
Hopefully, one of these so called doctors can look at the WHOLE picture of what's going on with your MIL and present an accurate diagnosis. Soon.
Best of luck
He wanted to see her for a follow up, and is scheduled for this coming Monday.... however, she had a another small seizure today. It lasted roughly 30 seconds... being that we’re told she’s not epileptic the EMS was called, and she’s now in the ER.
I do have to wonder about Barb’s question about Conversion Disorder or maybe something similar. She’s not epileptic, she has something that to us looks like a seizure, the neurologist say they don’t sound like a seizure, she’s obviously not faking, it’s not responding to seizure medication.
At first I thought maybe malingering... her health went downhill very fast after my wife and I went on our honeymoon, and everytime we take vacation or on the other side of town she gets sick. She’s well when my wife is around, she’s unwell when my wife isn’t physically with her. So it seemed easy: some sort of odd tantrum to get her way, because she’s well again when my wife is around.
The linger we’ve been married though, it’s like: wait a minute, something’s amiss here. It seemed to be the other way, she holds it together when my wife is around, and when she’s not accessible she loses whatever handle she has on things. So, I don’t think she’s faking, but but it’s like she doesn’t have a way to express whatever is going on in the inside, and it just blows up into these very strange, very visible symptoms and disorders.
You might be spot on with the antibiotics.... she was recently treated twice for a UTI that didn’t entirely clear up at once. The first treatment was just before Labor Day, and it wasn’t until the past two weeks that it’s cleared up.
He repeatedly diagnosed flu instead of doing a workup, which when another nurse intervened and brought her radiologist nephew into the picture, was d'x'ed as Crohn's Disease. Given the correct medicine, my sister then was able to handle what had become repeated debilitating two week episodes of incapacity.
I'm assuming seizure meds were prescribed after the abrupt onset of the seizures. Was an MRI done then?
Are you anywhere near a teaching hospital, or one of the major hospitals with extensive resources?
I wish I could offer more suggestions, but I just can't help thinking the doctors are missing something. There's just too much going on for everything to be "all right." And I'm beginning to wonder if there are lesions on her brain, or something similar.
Part of the challenge is that she doesn’t have much of a choice with doctors. The biggest supplement to her Medicare is Kelsey Care. Her primary care with that hospital system has been a great help to her through the years, but he’s made his opinion known that she’s outgrown his capabilities, and quite honestly outgrown what their network can competently provide. She absolutely does need new doctors, the problem seems to be the people she has access to either aren’t equipped for this, or just not interested in investing the time.
The one big step forward is within this year they’ve finally added a behavioral health specialist to their staff, where before she didn’t have access to one within her network. The biggest hurdle was getting her past the sigma of seeing a mental health professional. Now, that convincing had to come in the form of my wife saying “Look, ma, you’re not in the best state to make this decision for yourself, so Dad and I have made an appointment for you.” And fortunately she *did* go, and she has a follow up scheduled next week.
The first visit was kind of a let down that it came with another opinion stating “see nothing wrong here,” but maybe on a follow up he’ll do more to try to get some sort of diagnosis. He seemed hopeful that this temporary and treatable from a standpoint of her expat home, but nothing useful was otherwise suggested.
They did do the MRI and some sort of epilepsy test before putting her on the meds. She’s unfortunately limited on the choices, her neurologist says the stuff they prefer to prescribe clears through kidneys, so choices for dialysis patients are slim. She’s had varying degrees of success with devalproex, but the side effects were unmanageable (she was drowsy, uncoordinated, unable to express herself in any way, and basically spent several days at a time sleeping). She’s on a different pill now, I don’t recall the name though.
The weird thing though, her neurologist says she’s not epileptic, and while the episodes looks like full on seizures, she doesn’t think they’re seizures. And two of these episodes happen while on seizure medication. The first instance they said she wasn’t at therapeutic level and was probably either intentionally or unintentionally not taking them... the other time they said she was at therapeutic levels.
Thanks for the tip on hospitals with resources, I’d be willing to bet we do have one, I live not too far from the Houston medical district. It’s just a short drive away.
You’ve given me a good place to continue there! It would be a huge relief to get an answer. It’s become not just a quality of life issue for MIL, but my wife and FIL as well. FIL is in a very tough situation for 19+ hours/ day: he can’t sleep because MIL is either yelling at him, arguing in her sleep, or waiting until he’s asleep to try to walk unassisted. With my wife, when MIL is staying with us she’s better behaved, but she requires a lot of hands on constant attention. She can’t be left alone at night.
If it was up to brother in law she’d be in an assisted living home, but I’m doubtful they would be equipped to keep her well and comfortable... my sense is if that happened, not trying to be over dramatic, but I think it would be a quick drastic decline in her health and well-being.
I pointed out that there was a lot more to a body that heart and lungs.
It turned out that no one was going to the doctor with her and when a doc told her something she didn't like, she switched doctors.
It turned out that she was having seizures; she also had COPD.
Someone needs to visit the doctor WITH her and get the real picture.
I would imagine that has something to do with her mental status.
Why is she being put through the torment of resuscitation, I think that our bodies die and bringing someone back multiple times is not a kind thing to do.
I would find another doctor, saying nothing is wrong makes me wonder about the docs mental capacity.
Her symptoms remind me of a friend's sil. She was physically healthy, a bit younger than your mil and acting oddly. On a trip to the ER, the ER doc was making small talk and asked when her hubby had died of (6 months earlier), when he was told it was asbestos related cancer, he had her in for an MRI asap. She had numerous asbestos related lesions on her brain.
The husband of a another family friend started to do odd things. Turned out he had a brain tumour. Other than that he was incredibly healthy, but the tumour killed him.
Something in me wonders if maybe they’re missing something. Some sort of toxicity is something I’ve wondered about... in her twenties she worked in some sort of factory. Then with her joint replacements, in particular the newer one, I wondered if maybe some sort of toxicity or odd allergic reaction to a material in them.
We asked about these things with her first stay out of the hip surgery, but kinda got the brush off. They made it sound like they’d tested for it, but I’m not so sure they did.
I’ve tried to find a way to broach it with my wife, but I’m not sure how to approach. It’s very clear that it it’s an issue requiring surgery, her doctors have said her chances of surviving another surgery are low. In fact it’s lead to her being removed from the list to receive a donor kidney.
Any given week she‘ll have one to three appointments, and regular visits from a nurse and nurse practitioner. The nurse practitioner so far has been the one most eager to try to help, but a lot of this seems to land back at the feet of the neurologist and nephrologist... both seem hesitant to do anything, the each blame the other guy for her hardships.
It’s like you’re taking her in there, she’s not expressing herself or moving well, and you’re explaining, “From 11:00 to 3:00AM she spent the night yelling at deceased relatives she says keep trying to talk to her...” and the reaction is “Nah, she’s alright, I don’t see anything on the x-rays or MRI: try increasing her medications, and if that doesn’t work decrease them.”
Thanks for the note back, much appreciated! I do think her doctors have pretty much just given up on her.
I wonder if the episode where she ended up on the floor was related to the above (vasovagal syncope) or if she had a seizure. She had no heartbeat? Was EMS called?
My wife and I live in an adjacent neighborhood and got there quickly, but not fast enough to witness her revival. FIL seemed skeptical that her heart and breathing stopped, but with him being distressed the safe bet was to take the paramedics word for it.
What I forgot to mention was a cough she had. For about eight or nine months she had a severe chronic cough that no one could figure out. She was taking Benzonatate with no success, and her breathing treatments didn’t seem effective. For a while there was a suggestion that she was experiencing a cough syncope instead of seizures, but weeks ahead of this episode her cough had happened to clear up.
One nigh she just cough up an odd looking lump of something that was hanging out in her chest... I don’t know how to describe it except it looked like a hard lump of meat. But after it was gone there was relief: no more coughing, no pain or discomfort. It was bizarre.
So, a lot of the things in your link make sense in terms of other episodes witnesses. Between you and me, I kind of wondered if maybe she stood up too fast, got anxious, lost balance, and fainted.
She does have episodes where her movements become jerky, and her blood pressure suddenly drops. It usually gets written off as a common effect of dialysis, but I think things like this are worth looking at closely, she checks so many boxes.
On my way home from work today I had the idea maybe we should be keeping a journal. Perhaps we can get the doctors to take a serious look at this (instead of shrugging it off), if maybe we had some sort of record of what’s going on ahead of these episodes: how much did she sleep... what did she eat and how much... how active she’s been (often not very).
The difficulty with MIL is she does on an act for medical professionals. And that act can vary from extremes. If it’s a checkup, the act is ‘everything is fine, no complaints, these days have been uneventful.’ If it’s something she’s refusing to participate in (such as her weekly home visits from a nurse or physical therapist) it’s a big show of being in really intense pain and anguish and refusing to cooperate — as soon as the nurse is gone she snaps out of it and insists she’s fine, she’s not in pain, nothing’s wrong. Don’t get me wrong, I don’t doubt she’s in pain (double hip replacement, replacements in her wrists, both knees, and two vertebrae in her neck, and a wicked bad case of arthritis), but she plays it up to get her way, and whether she’s exaggerating to them or lying to us after the nurse is gone, she’s putting on an act for someone.... truth is probably somewhere in between, but I’m not in her body to be able to say what she’s truly feeling.
So what it comes down to is my wife has to be at every appointment to fill in the details MIL will not provide, and to clarify things that are either exaggerated or altogether false. FIL has also taken to recording her when she experiences wild shifts in behavior or mood to show these doctors “hey, this is what I’m dealing with... this is not how a perfectly healthy person behaves.”