4 ms·

Data is missing. How can you know you've had an undiagnosed condition for 7 years?

by avip 8y ago

asveikau 8y ago
Sounds like they have been convinced of it by their own symptoms but it has not had a proper diagnosis. In my own life experience this is common. People bounce around the medical system with varying diagnoses for many ailments, at various levels of confirmation, and sometimes the doctors aren't sure either.
- avip 8y ago
  There is some distinction to be made between the verbs "convinced of" and "diagnosed with". Not to downplay anyone's medical conditions, but there's lots of FUD surrounding candida, too much money on the table, and we should all be careful with terms.
  - asveikau 8y ago
    I take it that distinction is why they said "undiagnosed".
- coldtea 8y ago
  It's also quite common to be right and the doctors to just dismiss it (only to be proved by another doctors, sometimes year later).
HeWhoLurksLate 8y ago
I have ADHD. I have had it my entire life. I was "diagnosed" with it when I was 14. I was therefore "undiagnosed" for 14 years. Similarly, cars can have problems that a mechanic can't figure out how to fix. These are generally called undiagnosed problems, but they're still there.
- darawk 8y ago
  Sure, but this person implied that they had been to doctors and the doctors disagreed with their own self-diagnosis. That's a very different thing than simply not having been diagnosed.
code_duck 8y ago
Myself, I was increasingly certain I had an undiagnosed condition for years. My symptoms grew worse and it became apparent that they exceeded the bounds of normality. Doctors brushed off my questions with responses I knew weren’t true. Finally I was diagnosed with celiac disease, which explained why I was so tired after meals (I had thought it was a type ii or iv food allergy, which tests can’t easily detect unlike the type i (anaphylactic). It can make you tired 4-36 hours after ingesting a food). So as of 3-4 years ago I was saying I definitely had some undiagnosed food allergy or problem with eating.
GordonS 8y ago
Sometimes it's difficult to get a diagnosis, and sometimes you end up with crap doctors who run more or less the same tests for every patient and write off anyone that doesn't match as a hypochondriac/lunatic/time-waster. And sometimes doctors literally know less about your condition than you do yourself. If you've never been in this position yourself, I can understand why you'd be sceptical of the OP's claims, and indeed I'm sure there are lots of people that are convinced they have a particular condition despite what tests say. For context, I was written off by my NHS neurologist because I didn't match his standard battery of tests. My circumstances and symptoms pointed strongly to a small fiber neuropathy, but he scoffed and said it was very unlikely, and refused to do a skin biopsy to confirm it. Instead he labelled me with fibromyalgia, and hoped I'd disappear - but when questioned it was abundantly clear he literally knew next to nothing about fibromyalgia, and presumably used it as a generic label for "time wasters". Eventually I did get him to do the biopsy - which they fucked up. When the results were negative, he again tried to get rid of me, and I had to fight to get him to redo it properly - lo and behold, it was positive. I had a very similar experience with endocrinology - I have a rare endocrine condition, but the symptoms point absolutely towards a specific diagnosis - instead, I was basically told to "stop this silly nonsense", and it wasn't until several years later that I was diagnosed. NHS endocrinologists have a terrible reputation for anything that isn't diabetes. People rave about how wonderful the NHS is, but my (unfortunately substantial) experience has been shambolic. It's my observation that doctors (and consultants and registrars alike) don't update any of their knowledge or training since they left medical school, even if that was 40 years previous; they have no interest in recent medical developments; they have no interest in writing case studies or undertaking research; they could basically be replaced by a flow chart. /rant

Data is missing. How can you know you've had an undiagnosed condition for 7 years?

by avip 8y ago

Data is missing. How can you know you've had an undiagnosed condition for 7 years?

Sounds like they have been convinced of it by their own symptoms but it has not had a proper diagnosis. In my own life experience this is common. People bounce around the medical system with varying diagnoses for many ailments, at various levels of confirmation, and sometimes the doctors aren't sure either.

avip 8y ago
There is some distinction to be made between the verbs "convinced of" and "diagnosed with". Not to downplay anyone's medical conditions, but there's lots of FUD surrounding candida, too much money on the table, and we should all be careful with terms.
- asveikau 8y ago
  I take it that distinction is why they said "undiagnosed".
coldtea 8y ago
It's also quite common to be right and the doctors to just dismiss it (only to be proved by another doctors, sometimes year later).

HeWhoLurksLate 8y ago

I have ADHD. I have had it my entire life. I was "diagnosed" with it when I was 14. I was therefore "undiagnosed" for 14 years. Similarly, cars can have problems that a mechanic can't figure out how to fix. These are generally called undiagnosed problems, but they're still there.

darawk 8y ago
Sure, but this person implied that they had been to doctors and the doctors disagreed with their own self-diagnosis. That's a very different thing than simply not having been diagnosed.

code_duck 8y ago

Myself, I was increasingly certain I had an undiagnosed condition for years. My symptoms grew worse and it became apparent that they exceeded the bounds of normality. Doctors brushed off my questions with responses I knew weren’t true. Finally I was diagnosed with celiac disease, which explained why I was so tired after meals (I had thought it was a type ii or iv food allergy, which tests can’t easily detect unlike the type i (anaphylactic). It can make you tired 4-36 hours after ingesting a food). So as of 3-4 years ago I was saying I definitely had some undiagnosed food allergy or problem with eating.

GordonS 8y ago

Sometimes it's difficult to get a diagnosis, and sometimes you end up with crap doctors who run more or less the same tests for every patient and write off anyone that doesn't match as a hypochondriac/lunatic/time-waster. And sometimes doctors literally know less about your condition than you do yourself. If you've never been in this position yourself, I can understand why you'd be sceptical of the OP's claims, and indeed I'm sure there are lots of people that are convinced they have a particular condition despite what tests say. For context, I was written off by my NHS neurologist because I didn't match his standard battery of tests. My circumstances and symptoms pointed strongly to a small fiber neuropathy, but he scoffed and said it was very unlikely, and refused to do a skin biopsy to confirm it. Instead he labelled me with fibromyalgia, and hoped I'd disappear - but when questioned it was abundantly clear he literally knew next to nothing about fibromyalgia, and presumably used it as a generic label for "time wasters". Eventually I did get him to do the biopsy - which they fucked up. When the results were negative, he again tried to get rid of me, and I had to fight to get him to redo it properly - lo and behold, it was positive. I had a very similar experience with endocrinology - I have a rare endocrine condition, but the symptoms point absolutely towards a specific diagnosis - instead, I was basically told to "stop this silly nonsense", and it wasn't until several years later that I was diagnosed. NHS endocrinologists have a terrible reputation for anything that isn't diabetes. People rave about how wonderful the NHS is, but my (unfortunately substantial) experience has been shambolic. It's my observation that doctors (and consultants and registrars alike) don't update any of their knowledge or training since they left medical school, even if that was 40 years previous; they have no interest in recent medical developments; they have no interest in writing case studies or undertaking research; they could basically be replaced by a flow chart. /rant