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Yeah, I'm sick. Read all about it

forgetamnesia.tumblr.com

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Re: Yeah, I'm sick. Read all about it

#11

Post by [deleted] »

NhanH wrote: post #4
Madmallard wrote: post #3

Did 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…

[deleted]

Re: Yeah, I'm sick. Read all about it

#13

Post by Madmallard »

NhanH wrote: post #4
Madmallard wrote: post #3

Did 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…

Doctor's pretty much dismiss flouroquinolones as potential causes for these kinds of problems, which is part of why I asked. I also asked because I've been suffering similar symptoms, and have been in the ER multiple times in the last couple weeks. The only thing I could possibly think of that spurred this on was getting a nosocomial infection 3 months ago and taking Ciprofloxacin for it. I had bad tendon pain and nerve pain while on the drug but it sorta went away after a week. 2 1/2 months later, it's back full force and I'm getting very physically weak.

Re: Yeah, I'm sick. Read all about it

#14

Post by cpncrunch »

It sounds like you actually have Chronic Fatigue Syndrome - everything you say is very typical of CFS. I actually suffered from CFS myself, but have now fully recovered - I run my own business, and I'm a private pilot as well.

CFS is very treatable and you can recover from it. Unfortunately there is a lot of BS and quackery out there, making it difficult for patients to get the right information. Feel free to email me at cpncrunchhn@gmail.com.

Re: Yeah, I'm sick. Read all about it

#15

Post by whafro »

freehunter wrote: post #5

I'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…

I made a more detailed comment downthread, but in the pediatric rare disease world, ten years is generally considered a fairly typical amount of time before one can finally get a diagnosis, and that's for diagnoses that are actually known/identifiable/understood.

The easiest way to explain this is that doctors typically don't want to diagnose life-long conditions if they've never seen them before. So your family doctor will send you to an internist, who will send you to an internist at the local academic medical center, who sends you to three specialists at the same medical center, who don't know what it is. Then you get a referral to someone in another city who specializes in something someone thinks it might be – that guy has diagnosed 10 people with this rare disease. You fly out, and he says "nope, you're not it."

Wash, rinse, cry, repeat.

Re: Yeah, I'm sick. Read all about it

#16

Post by NhanH »

Madmallard wrote: post #13
NhanH wrote: post #4

Earlier quoted context omitted.

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…

Doctor's pretty much dismiss flouroquinolones as potential causes for these kinds of problems, which is part of why I asked. I also asked because I've been suffering similar symptoms, and have been in the ER multiple times in the last couple weeks. The only thing I could possibly think of that spurred this on was getting a nosocomial infection 3 months ago and taking Ciprofloxacin for it. I had bad tendon pain and ne…

I apologize for the tone of my first comment. I didn't mean to direct that personally to you, just as a frustration to the common reaction of "helping".

As to the question you made, the writer said that he has been sick for not a few weeks or month, but a decade. And when I first read your comment, it's practically saying to me "Are you taking steroids while being sick in the last 10 years?" - again, probably not a charitable reading of the comment as I could have made.

I'm sorry to hear about your condition.

Re: Yeah, I'm sick. Read all about it

#17

Post by teacup50 »

bbcbasic wrote: post #12

It is sickening that a talented guy can't get a job just because he needs to work part time to manage a disease.

Really? Sickening? There are any number of candidates available that won't require special consideration to manage a disease, so why should someone solely take on the charity burden of giving this fellow a job?

Re: Yeah, I'm sick. Read all about it

#18

Post by steven2012 »

I'm reading into this, but I would hazard a guess that it appears he plays a lot of video games or surfs the web/blogs (he seems to have a lot to write about games, etc), and his roommates probably see this and react negatively to it, especially when he complains about being tired all the time. It's not normal for good people to act like jackasses, so it feels like there's something more to this story than just them not understanding that he has an illness.

Out of curiosity, if there is no name for this illness he has, what sort of treatments does he do that require 2-3 trips to the hospital per week? Is he getting dialysis or blood transfusions?

Re: Yeah, I'm sick. Read all about it

#19

Post by kansface »

NhanH wrote: post #4
Madmallard wrote: post #3

Did 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…

> He's helping the same way as the writer's roommate is "helping".

Madmallard suggested a possible cause that matches the symptoms and also points out that doctors tend to ignore it. The roommate more or less suggested OP try not being sick.

Re: Yeah, I'm sick. Read all about it

#20

Post by kansface »

cpncrunch wrote: post #14

It sounds like you actually have Chronic Fatigue Syndrome - everything you say is very typical of CFS. I actually suffered from CFS myself, but have now fully recovered - I run my own business, and I'm a private pilot as well. CFS is very treatable and you can recover from it. Unfortunately there is a lot of BS and quackery out there, making it difficult for patients to get the right information. Feel free to email m…

Is racking pain characteristic of CFS?
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