5 ms·

He spends a lot of time trashing the physicians because they won't do additional workup and chase MRI abnormalities. When he finally gets somebody to do somethi

by davak 11y ago

He spends a lot of time trashing the physicians because they won't do additional workup and chase MRI abnormalities. When he finally gets somebody to do something, he just put his brother in some temporary pain without any long lasting improvement. Yes, the doctors debated on if he has this or that specific condition, because ultimately it didn't matter because he has a condition that isn't fixable. Doctors are best trained to identify what is fixable. Disease states are fuzzy. Many times if somebody has a disease is not boolean in nature. However, all the doctors correctly predicted that current medical knowledge had nothing that would be helpful. If they would have just believed the physicians, they would have saved some money and the patient some pain. Autism is an awful collection of diseases, but slamming the medical system in this case is not justified.

bro-stick 11y ago
MD, PhD such as developmental or occupational psychiatrists or psychologists whom specialize in the particular spectrum of autism behaviors/impairments help most with coping skills, because there is no "magic cure" for autism at this point. I think some supporting caregivers get frustrated and take that out on others or blame the doctors when they're barking up the wrong trees, when they're just looking in the wrong places because they don't seek out support groups or more information. For example, what's sinister about one part of the spectrum , high-functioning autism, is that it isn't even looked at, much less labeled, and it's impossible to get SSIDI even if someone is unable to hold either a job or relationships. Finally, the author shouldn't feel terrible... I had Marfan Syndrome my entire life and am looking (not) forward to a valve replacement. I diagnosed it correctly myself after every doctor over (at the time) 35 years missed it entirely. Doctors are too busy, don't have time to get to know their patients or catch life-threatening, so you have to know your own body and become an MD yourself because few of them are actually any good.
- dnautics 11y ago
  I think that is somewhat common situation with Marfan Syndrome. I'm fairly familiar with it because a postdoc in my lab gave a talk about it (it was her previous research) and I don't forget things easily -- but anyways, my girlfriend - who is a transplant hepatologist - told me how in her first year of internship, one of her co-interns clearly had Marfan - she didn't say anything until a patient case came up and and she quizzed the co-intern on what underlying condition the patient had... The intern couldn't figure it out until she suggested Marfan's (and he did know what it was)... Then she pulled him aside, and suggested to him directly that he might also have the condition. He was stunned for a moment, and then proceeded to get a genetic test which confirmed her diagnosis.
- QSIITurbo 11y ago
  I'm under the impression that Marfan does not necessarily imply valvular defects. So are you certain that your doctors missed the Marfan (which is very easy to recognise in severe forms), or just that they did not bother to mention it (since there is no cure / need to treat)? The valvular defect was detected aurally, I presume?
- someotheracct7 11y ago
  That's.... interesting.... I've just had a look at the Marfan page (http://www.marfan.org/about/signs http://www.marfan.org/about/signs) and there's a lot that I seem to match there: long skinny body type, all my fingers are double jointed (not as flexible though as in some of those photos), flat feet, crowded teeth, I had congenital cataracts and also early-onset (around 2 years of age) glaucoma and had a spontaneous pneumothorax when I was around 18 (which wasn't severe but did recur once). Wondering if I should have the test. Well aware of the tendency to see oneself in medical articles though!
  - davak 11y ago
    Yes. Yes you should be tested.
Nkdo 11y ago
Not to mention wasting time that could have actually saved a life. MRI machines are highly expensive and there are always long waiting lists before you can get access to one because those things just don't grow on trees and are a limited resource (number of machines versus number of patients.) Most doctors know better than to waste a MRI on someone that will not, in any way, benefit from it. Not when there are people with heart abnormalities or potential tumors to diagnose on the waiting list. Unsurprisingly, the only people who agreed at first to do a MRI for his brother used an open MRI, which are far less precise than the closed ones, and usually reserved for the claustrophobic and morbidly obese. So he didn't take precious MRI time from people who actually needed it.
- thinkcomp 11y ago
  Obviously moral judgments in medicine can be incredibly difficult, but who's to say that this person's life might not have been drastically altered for the better ("saved") if a MRI scan 20-25 years earlier had revealed the cyst, so that could have been removed? Then the brain might have developed normally. The point is that the condition is time-dependent because the brain develops most in a child's early years, and scanning early could make a difference.
  - DanBC 11y ago
    You use exactly the same arguments as people selling mercury chelation or hyperbaric oxygen chambers or etc. There's a huge list of horseshit peddled to people with autism (or more usually their parents). http://www.autismsciencefoundation.org/what-is-autism/autism-diagnosis/beware-non-evidence-based-treatments http://www.autismsciencefoundation.org/what-is-autism/autism...
    - thinkcomp 11y ago
      Not exactly the same, because this has absolutely nothing to do with mercury, and has support in journal articles that have not been retracted on account of scandal. Search on PubMed for yourself, or start here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3677555/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3677555/ The scams you mention are even discussed in the article. Did you read it? Or are you saying that MRIs are like chelation therapy?

by davak 11y ago

bro-stick 11y ago

MD, PhD such as developmental or occupational psychiatrists or psychologists whom specialize in the particular spectrum of autism behaviors/impairments help most with coping skills, because there is no "magic cure" for autism at this point. I think some supporting caregivers get frustrated and take that out on others or blame the doctors when they're barking up the wrong trees, when they're just looking in the wrong places because they don't seek out support groups or more information. For example, what's sinister about one part of the spectrum , high-functioning autism, is that it isn't even looked at, much less labeled, and it's impossible to get SSIDI even if someone is unable to hold either a job or relationships. Finally, the author shouldn't feel terrible... I had Marfan Syndrome my entire life and am looking (not) forward to a valve replacement. I diagnosed it correctly myself after every doctor over (at the time) 35 years missed it entirely. Doctors are too busy, don't have time to get to know their patients or catch life-threatening, so you have to know your own body and become an MD yourself because few of them are actually any good.

dnautics 11y ago
I think that is somewhat common situation with Marfan Syndrome. I'm fairly familiar with it because a postdoc in my lab gave a talk about it (it was her previous research) and I don't forget things easily -- but anyways, my girlfriend - who is a transplant hepatologist - told me how in her first year of internship, one of her co-interns clearly had Marfan - she didn't say anything until a patient case came up and and she quizzed the co-intern on what underlying condition the patient had... The intern couldn't figure it out until she suggested Marfan's (and he did know what it was)... Then she pulled him aside, and suggested to him directly that he might also have the condition. He was stunned for a moment, and then proceeded to get a genetic test which confirmed her diagnosis.
QSIITurbo 11y ago
I'm under the impression that Marfan does not necessarily imply valvular defects. So are you certain that your doctors missed the Marfan (which is very easy to recognise in severe forms), or just that they did not bother to mention it (since there is no cure / need to treat)? The valvular defect was detected aurally, I presume?
someotheracct7 11y ago
That's.... interesting.... I've just had a look at the Marfan page (http://www.marfan.org/about/signs http://www.marfan.org/about/signs) and there's a lot that I seem to match there: long skinny body type, all my fingers are double jointed (not as flexible though as in some of those photos), flat feet, crowded teeth, I had congenital cataracts and also early-onset (around 2 years of age) glaucoma and had a spontaneous pneumothorax when I was around 18 (which wasn't severe but did recur once). Wondering if I should have the test. Well aware of the tendency to see oneself in medical articles though!
- davak 11y ago
  Yes. Yes you should be tested.

Nkdo 11y ago

Not to mention wasting time that could have actually saved a life. MRI machines are highly expensive and there are always long waiting lists before you can get access to one because those things just don't grow on trees and are a limited resource (number of machines versus number of patients.) Most doctors know better than to waste a MRI on someone that will not, in any way, benefit from it. Not when there are people with heart abnormalities or potential tumors to diagnose on the waiting list. Unsurprisingly, the only people who agreed at first to do a MRI for his brother used an open MRI, which are far less precise than the closed ones, and usually reserved for the claustrophobic and morbidly obese. So he didn't take precious MRI time from people who actually needed it.

thinkcomp 11y ago
Obviously moral judgments in medicine can be incredibly difficult, but who's to say that this person's life might not have been drastically altered for the better ("saved") if a MRI scan 20-25 years earlier had revealed the cyst, so that could have been removed? Then the brain might have developed normally. The point is that the condition is time-dependent because the brain develops most in a child's early years, and scanning early could make a difference.
- DanBC 11y ago
  You use exactly the same arguments as people selling mercury chelation or hyperbaric oxygen chambers or etc. There's a huge list of horseshit peddled to people with autism (or more usually their parents). http://www.autismsciencefoundation.org/what-is-autism/autism-diagnosis/beware-non-evidence-based-treatments http://www.autismsciencefoundation.org/what-is-autism/autism...
  - thinkcomp 11y ago
    Not exactly the same, because this has absolutely nothing to do with mercury, and has support in journal articles that have not been retracted on account of scandal. Search on PubMed for yourself, or start here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3677555/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3677555/ The scams you mention are even discussed in the article. Did you read it? Or are you saying that MRIs are like chelation therapy?