4 ms·

Yes, this has happened to several family members in the US, though thankfully mine was diagnosed properly because I could point to family history. Initially the

Yes, this has happened to several family members in the US, though thankfully mine was diagnosed properly because I could point to family history. Initially they wanted to write it off to migraines (I can't blame them since it's more common and can have similar symptoms at first) and now nine years later it's painful to use my hands and I've mostly given up martial arts. It would almost certainly be worse if I hadn't had the family history to point to and actually convince them to do the tests that would confirm the diagnosis. For chronic illnesses defined by random irreparable damage the sooner you start treatment the better your outcomes are likely to be. I am surprised that four doctors in a row did this, that's shocking. Usually a second or third opinion is enough that at least one of the doctors is paying attention.

korijn 7y ago
What diagnosis did you end up receiving exactly?
- neltnerb 7y ago
  I wouldn't worry if it's little stuff, migraines really are weird. Don't anxiety yourself or anything, I just have a propensity for immunological stuff. In my case it was early symptoms of multiple sclerosis.
arkades 7y ago
One of the doctors took them seriously, did a biopsy, and gave them a diagnosis. They did not like their diagnosis because “idiopathic” means “we don’t know what causes this,” which the patient translated as “go the fuck away.” As if all human disease is deeply understood and an admission of ignorance is equivalent to laziness. They then continued going to additional doctors.
- armada651 7y ago
  > As if all human disease is deeply understood and an admission of ignorance is equivalent to laziness. People think that there is a pill or operation for whatever ails you, which is simply not true even with modern medicine.
  - arkades 7y ago
    Indeed. Especially in neurology, where the tissue is non-regenerative. Hopefully we can find ways to slow tissue destruction - often we cannot - but that’s a far cry short from reversing it.
- nsaphra 7y ago
  Hi, I wrote the post! I'm actually very grateful to my neurologist who gave me my idiopathic diagnosis, because he was the only doctor to figure out the mechanism of action. He's been enormously helpful. It doesn't change the fact that, as a patient, an idiopathic diagnosis is not a satisfying outcome if it doesn't point to a course of treatment. And it's certainly not something I view as a "final diagnosis" -- I'm patient, and technology and medicine are still improving and I hope it'll be possible to identify the cause and treat it in the future.
  - neltnerb 7y ago
    As a fellow patient -- accepting that sometimes life is uncontrollable can bring a lot of peace. Even if there is no treatment, acceptance does a lot for happiness. Nonetheless, know that your post is appreciated. For now it's mostly handling small fasteners that gets me, typing is usually mostly okay. But since I do hardware prototyping I had to learn to ask for help a lot more than I was used to. I also find it's sometimes helpful to wear a cloth around the more painful hand to kind of remind people that the pain isn't obvious... well, plus if it's a little wet it helps the pain a lot so it's functional too. But invisible pain means my coworkers frequently assume I'm feeling about how they are. And I feel bad saying no to stuff since technically I can still do it... it's just painful to do.

korijn 7y ago

What diagnosis did you end up receiving exactly?

neltnerb 7y ago
I wouldn't worry if it's little stuff, migraines really are weird. Don't anxiety yourself or anything, I just have a propensity for immunological stuff. In my case it was early symptoms of multiple sclerosis.

arkades 7y ago

One of the doctors took them seriously, did a biopsy, and gave them a diagnosis. They did not like their diagnosis because “idiopathic” means “we don’t know what causes this,” which the patient translated as “go the fuck away.” As if all human disease is deeply understood and an admission of ignorance is equivalent to laziness. They then continued going to additional doctors.

armada651 7y ago
> As if all human disease is deeply understood and an admission of ignorance is equivalent to laziness. People think that there is a pill or operation for whatever ails you, which is simply not true even with modern medicine.
- arkades 7y ago
  Indeed. Especially in neurology, where the tissue is non-regenerative. Hopefully we can find ways to slow tissue destruction - often we cannot - but that’s a far cry short from reversing it.
nsaphra 7y ago
Hi, I wrote the post! I'm actually very grateful to my neurologist who gave me my idiopathic diagnosis, because he was the only doctor to figure out the mechanism of action. He's been enormously helpful. It doesn't change the fact that, as a patient, an idiopathic diagnosis is not a satisfying outcome if it doesn't point to a course of treatment. And it's certainly not something I view as a "final diagnosis" -- I'm patient, and technology and medicine are still improving and I hope it'll be possible to identify the cause and treat it in the future.
- neltnerb 7y ago
  As a fellow patient -- accepting that sometimes life is uncontrollable can bring a lot of peace. Even if there is no treatment, acceptance does a lot for happiness. Nonetheless, know that your post is appreciated. For now it's mostly handling small fasteners that gets me, typing is usually mostly okay. But since I do hardware prototyping I had to learn to ask for help a lot more than I was used to. I also find it's sometimes helpful to wear a cloth around the more painful hand to kind of remind people that the pain isn't obvious... well, plus if it's a little wet it helps the pain a lot so it's functional too. But invisible pain means my coworkers frequently assume I'm feeling about how they are. And I feel bad saying no to stuff since technically I can still do it... it's just painful to do.