Yeah, I'm sick. Read all about it
forgetamnesia.tumblr.com
Yeah, I'm sick. Read all about it
1–10 of 78 posts
Re: Yeah, I'm sick. Read all about it
#2About the issue with it hasn't got a name: wouldn't be a human biologist be interested in researching this thing? Plus getting his or her name to name the disease?
Re: Yeah, I'm sick. Read all about it
#3Did you take flouroquinolone or other bacteriocidal antibiotics, or take statins/steroids? These things are known to cause mitochondrial disorder which can manifest in lots of ways but the predominant similarities are pain, fatigue, and improper response to exercise (it taking a toll on you as opposed to making you stronger).
Edit: They're also pretty much ignored/under-represented by the medical community.
I suppose me saying "known" was somewhat misattributed because they're known by researchers, not by doctors.
Re: Yeah, I'm sick. Read all about it
#4Did you take flouroquinolone or other bacteriocidal antibiotics, or take statins/steroids? These things are known to cause mitochondrial disorder which can manifest in lots of ways but the predominant similarities are pain, fatigue, and improper response to exercise (it taking a toll on you as opposed to making you stronger). Edit: They're also pretty much ignored/under-represented by the medical community. I suppose…
I'm sorry, but the writer wrote a piece about how his sickness doesn't have a name, how he is REALLY REALLY sick, to the extent of going to the hospital 3 days a week. And your first comment is to essentially try to diagnose his problem as something (seemingly) relatively simple?
Really?
Edit: It's extremely unlikely that with his state, he hasn't known of everything we could have suggested. And since someone is saying that I'm appealing to authority, I'm not. I didn't mean to say that the doctor knew best, but rather him, the writer, have done his research and knew about his condition.
And as for whether the comment I'm replying to is "helping". That's the point I'm trying to make. He's helping the same way as the writer's roommate is "helping".
The point I was trying to make is that, half of the post was about how hard it is for people outside himself to know about his condition. And to my interpretation, it's better to just take his words. With that in mind, it feels incredibly ironic that the first comment in the topic is essentially someone trying to guess what's the issue. And no, I'm also not trying to help, because that's also the point: he doesn't need my help, there is nothing I, an internet stranger could have helped. And from the tone of the post, I wasn't aware that he was looking for information, merely expressing his frustration. I'm sharing my sympathy with him, and if we meet one day, I've love to buy him a beer. As of now, I'd just take his words, and shudder when realizing there are many type of odd disorder out there.
I realized the tone wasn't necessary, and I apologize for that.
Re: Yeah, I'm sick. Read all about it
#5I'm not sure I understand. Any of it... How can he be sick for nine years and the doctors don't have a name for what's wrong with him? Is it one medical condition, or does he suffer from depression and poor liver function and malabsorption? What kind of government aid is he seeking, and why is he being denied (as opposed to studied to find out what's wrong)?
Lastly, who is he? I googled Forgot Amnesia and didn't find anything of note. Not that his identity has anything to do with his illness or his struggle, but it would help put some identity and background to the story. Is he well known? Is he rich and famous? Is he poor and struggling? He says he's a writer and an indie dev, has he done anything I would know of, or does he have a storefront where I could buy something to help his finances?
For a story titled "Read all about it", it doesn't really say much. I feel like I want to help, but now I just feel bad for someone I don't know and can't do anything about.
Re: Yeah, I'm sick. Read all about it
#6Did you take flouroquinolone or other bacteriocidal antibiotics, or take statins/steroids? These things are known to cause mitochondrial disorder which can manifest in lots of ways but the predominant similarities are pain, fatigue, and improper response to exercise (it taking a toll on you as opposed to making you stronger). Edit: They're also pretty much ignored/under-represented by the medical community. I suppose…
I'm sorry, but the writer wrote a piece about how his sickness doesn't have a name, how he is REALLY REALLY sick, to the extent of going to the hospital 3 days a week. And your first comment is to essentially try to diagnose his problem as something (seemingly) relatively simple? Really? Edit: It's extremely unlikely that with his state, he hasn't known of everything we could have suggested. And since someone is sayi…
In the book "What do you care what other people think?" there's a story where Feynman had a good idea that his wife might be suffering from tuberculosis, but he restrained himself from saying anything because the symptoms were so simple and obvious that he figured the doctors had already ruled out tuberculosis as a possibility. His wife died sometime later because she was diagnosed and treated for it too late.
I don't think relying on professionals to be perfect is a good idea.
Re: Yeah, I'm sick. Read all about it
#7About the issue with it hasn't got a name: wouldn't be a human biologist be interested in researching this thing? Plus getting his or her name to name the disease?
I know more about the pediatric cases, but fwiw... There are TONS of 'conditions' that don't have a name (quotes only because that may not always be the right term).
Sometimes it's not that simple – sometimes it's a matter of doctors trying to see if it's actually an unusual presentation of an existing condition. That's the usual focus for the first few years of dealing with a rare condition: the search for a diagnosis. You may have a dozen symptoms, and a given condition may overlap with eight of them, and with six of another, and with ten of another, but something stands in the way of getting a diagnosis.
Eventually, you may have exhausted your options for diagnoses. None of the existing conditions fit what you have, for one reason or another. At that point, the best you can hope for is to find other people who match what you have. Get a small cohort together, and maybe the NIH will fund a grant through the Undiagnosed Diseases Program or something.
It's long, uncertain, and frustrating. We're working on stuff to help folks like these (though kids, mostly) over at Kinsights, and it's heart-wrenching to hear about and watch this process unfold.
Re: Yeah, I'm sick. Read all about it
#8Did you take flouroquinolone or other bacteriocidal antibiotics, or take statins/steroids? These things are known to cause mitochondrial disorder which can manifest in lots of ways but the predominant similarities are pain, fatigue, and improper response to exercise (it taking a toll on you as opposed to making you stronger). Edit: They're also pretty much ignored/under-represented by the medical community. I suppose…
I'm sorry, but the writer wrote a piece about how his sickness doesn't have a name, how he is REALLY REALLY sick, to the extent of going to the hospital 3 days a week. And your first comment is to essentially try to diagnose his problem as something (seemingly) relatively simple? Really? Edit: It's extremely unlikely that with his state, he hasn't known of everything we could have suggested. And since someone is sayi…
Doctors miss things occasionally. Sometimes they might not have the full picture. If he's going to the hospital three days a week and they don't know what's wrong with him and haven't published his case in a journal, it sounds like they're doing treatment for what would otherwise kill him rather than diagnosis on the root cause of the illness.
Very much a lack of detail, though.
Re: Yeah, I'm sick. Read all about it
#9Did you take flouroquinolone or other bacteriocidal antibiotics, or take statins/steroids? These things are known to cause mitochondrial disorder which can manifest in lots of ways but the predominant similarities are pain, fatigue, and improper response to exercise (it taking a toll on you as opposed to making you stronger). Edit: They're also pretty much ignored/under-represented by the medical community. I suppose…
I'm sorry, but the writer wrote a piece about how his sickness doesn't have a name, how he is REALLY REALLY sick, to the extent of going to the hospital 3 days a week. And your first comment is to essentially try to diagnose his problem as something (seemingly) relatively simple? Really? Edit: It's extremely unlikely that with his state, he hasn't known of everything we could have suggested. And since someone is sayi…
Stop it. He asked a fairly simple question, while you're jumping down his throat and appealing to authority.
At least he's trying to help.
Re: Yeah, I'm sick. Read all about it
#10Did you take flouroquinolone or other bacteriocidal antibiotics, or take statins/steroids? These things are known to cause mitochondrial disorder which can manifest in lots of ways but the predominant similarities are pain, fatigue, and improper response to exercise (it taking a toll on you as opposed to making you stronger). Edit: They're also pretty much ignored/under-represented by the medical community. I suppose…
I'm sorry, but the writer wrote a piece about how his sickness doesn't have a name, how he is REALLY REALLY sick, to the extent of going to the hospital 3 days a week. And your first comment is to essentially try to diagnose his problem as something (seemingly) relatively simple? Really? Edit: It's extremely unlikely that with his state, he hasn't known of everything we could have suggested. And since someone is sayi…
You're not sorry, and you're not helping at all. Your comment, as opposed to the one that is trying, is the one that ought to be disparaged.