4 ms·

Because I agree with her that she's not getting the help she needs, but I don't know where else to go. - Her PCP seems useless - basically a glorified project

Because I agree with her that she's not getting the help she needs, but I don't know where else to go. - Her PCP seems useless - basically a glorified project manager for other expert opinions, and the time taken to get appointments with these experts is straining. - Going to urgent care, or doing an 'online Dr visit' just gets the advice to go to ER instead, because of the breathing. - Going to ER (which we have, several times) just gets her admitted to the ER beds, put on an IV for fluids, maybe a chest X-Ray taken, and then discharged after a few hours with a recommendation to go see her PCP. - the neurologist has been the best of them so far, but she's 30 miles away and we get to see her once per month. I'm grateful for the help we've had from the neurologist, but it's not much use at 3am when she can't breath, again, is in pain, again, and feels like her chest has a bar pressing down across it, again. Going to ER because of this is covered above. No-one wants to take ownership, everyone (with the exception so far of our neurologist) wants to try and get someone else to "manage this case". It doesn't leave one with the warm fuzzies, especially given the last couple of months. It has actually reached the point where I've considered - not seriously yet, but it's still there - selling up, leaving the US and going back home to the UK. Myself and my son are citizens by right, I have enough cash/equivalents that getting a spousal visa wouldn't be an issue, and we'd pay the NHS surcharge for a few years - still a lot less than my insurance here. We could even be closer to family for better support. The largest factor against, in fact, is the logistics of simply getting her there, taking a plane seems like a poor option atm, and she gets very seasick even on cruise liners. Once there, having bought a house with the proceeds of the sale of this one, retirement would be pretty easy on me, and maybe a health service more focussed on making people better, over making money, might be better for her.

ianburrell 3y ago
Can you find a new PCP? One that may not be a good family doctor but can coordinate care. You are probably already doing it, but I have heard that it is really important to have advocate when patient can't organize themselves. If you can, go to appointments, take notes, and ask lots of questions. Push on uncertainty until get tests and answers. Try and solve separate problems, like Ativan dependency, so can focus on the big one and she feels better. One question I had is what does the treatment for raising sodium too quickly look like and is it worth doing even if the MRI was negative. Also, I vaguely remember reading about group of doctors that solve medical mysteries. I found an article, https://www.nytimes.com/2019/01/07/health/patients-medical-mysteries.html https://www.nytimes.com/2019/01/07/health/patients-medical-m..., but not sure one I read.
- spacedcowboy 3y ago
  I'm in the process of looking for a new PCP - although now we actually do have access to the specialists that I think we needed to, and our interaction is more or less just "send a non-urgent message" on the web-platform, and get a referral back the next working day. I am at every single one of these appointments - I was in a better position to recall how things went down, and I am very much her advocate. She's had many many tests - which have ruled out a lot of truly terrifying things, but there is still no affirmative diagnosis of what it is she has. The last discharge from ER listed her as having "restless leg syndrome" - which is obviously not a diagnosis. The tremors in her legs are a symptom, not a cause, and they only started after the sodium levels were raised. The treatment was the prednisone that the neurologist put her on prior to getting the MRI data, but prednisone has its own side-effects, so we were told to stop taking it once the MRI data was obtained. The "Undiagnosed diseases network" is a great find - thank you. I have just enrolled her case in "Teladoc" which can give 'expert medical opinions' using her release notes and visit documentation. I'm hopeful they might find something, but the UDN looks like 'House' for real. I'll definitely look into it :)
  - tough 3y ago
    This could be absurd but have you tried ChatGPT for clues?
  - CapstanRoller 3y ago
    Wild guess (I am not a doctor in the slightest): could it be some kind of dopamine regulation problem? >Dopamine has been shown to facilitate anti-diuretic hormone (ADH) release, driving the dilute urine excretion which causes hyponatraemia https://www.e-jmd.org/journal/view.php?number=194 https://www.e-jmd.org/journal/view.php?number=194 >Previous research has shown dopamine receptors to be altered in fibromyalgia, burning mouth syndrome, and atypical facial pain https://www.practicalpainmanagement.com/resources/news-and-research/dopamines-crucial-role-priming-chronic-pain https://www.practicalpainmanagement.com/resources/news-and-r... >We may have been looking at the wrong thing all along, or we may find that both dopamine and glutamate pathways play a role in RLS. https://www.hopkinsmedicine.org/news/media/releases/restless_legs_syndrome_insomnia_and_brain_chemistry_a_tangled_mystery_solved https://www.hopkinsmedicine.org/news/media/releases/restless...
s1artibartfast 3y ago
Thanks, I see now. For some reason I thought you were talking about non-medical help for yourself. I guess you are in some sense looking for non-medical help navigating the medical system itself. I'm guessing any advice I offer you would have already thought of, but maybe you can pay over the counter for a medical consultant in the UK or anywhere for that matter
robodan 3y ago
You might see if a destination medical establishment like the Mayo Clinic or Cleveland Clinic could be more responsive. These kinds of places are setup so people can fly in, see a bunch of specialists, and get a bunch of tests in a single trip.

ianburrell 3y ago

Can you find a new PCP? One that may not be a good family doctor but can coordinate care. You are probably already doing it, but I have heard that it is really important to have advocate when patient can't organize themselves. If you can, go to appointments, take notes, and ask lots of questions. Push on uncertainty until get tests and answers. Try and solve separate problems, like Ativan dependency, so can focus on the big one and she feels better. One question I had is what does the treatment for raising sodium too quickly look like and is it worth doing even if the MRI was negative. Also, I vaguely remember reading about group of doctors that solve medical mysteries. I found an article, https://www.nytimes.com/2019/01/07/health/patients-medical-mysteries.html https://www.nytimes.com/2019/01/07/health/patients-medical-m..., but not sure one I read.

spacedcowboy 3y ago
I'm in the process of looking for a new PCP - although now we actually do have access to the specialists that I think we needed to, and our interaction is more or less just "send a non-urgent message" on the web-platform, and get a referral back the next working day. I am at every single one of these appointments - I was in a better position to recall how things went down, and I am very much her advocate. She's had many many tests - which have ruled out a lot of truly terrifying things, but there is still no affirmative diagnosis of what it is she has. The last discharge from ER listed her as having "restless leg syndrome" - which is obviously not a diagnosis. The tremors in her legs are a symptom, not a cause, and they only started after the sodium levels were raised. The treatment was the prednisone that the neurologist put her on prior to getting the MRI data, but prednisone has its own side-effects, so we were told to stop taking it once the MRI data was obtained. The "Undiagnosed diseases network" is a great find - thank you. I have just enrolled her case in "Teladoc" which can give 'expert medical opinions' using her release notes and visit documentation. I'm hopeful they might find something, but the UDN looks like 'House' for real. I'll definitely look into it :)
- tough 3y ago
  This could be absurd but have you tried ChatGPT for clues?
- CapstanRoller 3y ago
  Wild guess (I am not a doctor in the slightest): could it be some kind of dopamine regulation problem? >Dopamine has been shown to facilitate anti-diuretic hormone (ADH) release, driving the dilute urine excretion which causes hyponatraemia https://www.e-jmd.org/journal/view.php?number=194 https://www.e-jmd.org/journal/view.php?number=194 >Previous research has shown dopamine receptors to be altered in fibromyalgia, burning mouth syndrome, and atypical facial pain https://www.practicalpainmanagement.com/resources/news-and-research/dopamines-crucial-role-priming-chronic-pain https://www.practicalpainmanagement.com/resources/news-and-r... >We may have been looking at the wrong thing all along, or we may find that both dopamine and glutamate pathways play a role in RLS. https://www.hopkinsmedicine.org/news/media/releases/restless_legs_syndrome_insomnia_and_brain_chemistry_a_tangled_mystery_solved https://www.hopkinsmedicine.org/news/media/releases/restless...

s1artibartfast 3y ago

Thanks, I see now. For some reason I thought you were talking about non-medical help for yourself. I guess you are in some sense looking for non-medical help navigating the medical system itself. I'm guessing any advice I offer you would have already thought of, but maybe you can pay over the counter for a medical consultant in the UK or anywhere for that matter

robodan 3y ago

You might see if a destination medical establishment like the Mayo Clinic or Cleveland Clinic could be more responsive. These kinds of places are setup so people can fly in, see a bunch of specialists, and get a bunch of tests in a single trip.